Niall and Lisbeth
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Lisbeth is mum to Niall, who’s in primary school. He is autistic and lives with attention deficit hyperactivity disorder, oppositional defiant disorder, anxiety and a complex range of other conditions.
Lisbeth said Niall’s disability wasn’t diagnosed until he started primary school.
‘I got through all that period without a diagnosis, so there were obviously indicators, but it was really challenging to get help,’ Lisbeth told the Royal Commission. ‘He’s actually quite bright … borderline gifted … So, I think if we can get through life, get him through school, he actually has quite good prospects to be employed in some, like, coding or engineering or some of these areas that are actually where he can contribute.’
Lisbeth used to run her own business, but gave it up to care and advocate for Niall. She now receives a carer allowance and hopes one day to go back to work.
‘I do expect that I am going to have to support him at some level … I don’t want to be in the situation where rent is so high we can’t afford to live in a rental property.’
Before the NDIS, Niall received support from a state government scheme for children with autism. To switch to the NDIS, Lisbeth had to pay for doctors’ reports.
‘I had to get a private paediatrician to get him diagnosed fast enough to access [a particular] program because obviously I didn’t have any funding … I maxed out our safety net. I was like in major trouble with rental issues because I was having to choose … which things get paid first and keep this amount of money free. It was absolute hell.’
After submitting the evidence, the NDIS offered less support than he had been getting under the state scheme.
‘It was really frustrating because even before NDIS I had evidence of how he was seeing weekly OT [occupational therapist], he was seeing a psychologist. All these, I was just asking them to maintain his current therapies, and they just cut them all.’
Lisbeth appealed. When she spoke to the Royal Commission, she was still waiting for an NDIS plan.
‘I have been saying, “I’m not coping.” … I’m on a carer payment currently, it puts me in financial hardship and means I have to hold back money that I need to be paying out to other things like rent and … because of this appeals process, I’ve just been sort of trapped.’
Lisbeth rents privately and has been waiting several years for public housing. Caring for Niall and paying rent was particularly difficult during COVID-19 lockdowns.
‘Single parents were provided with a COVID supplement federally, parenting payment and other payments, but [a person on the] carer payment was excluded from that, so I found it really challenging to again maintain rental payments.’
She said most housing supports are for adults with disability rather than families caring for people with disability.
‘Because there is no data captured on carers in regards to housing, there's no way to challenge what's going on … So there are families with disabled children becoming homeless, basically.’
To find suitable housing, Lisbeth has moved further away from Niall’s school.
‘No-one has a plan for families with disabled children. We are not in any priority area. We just fall into the general insecure housing priority. That’s where I am.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.