Haven and Lucian
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.
Lucian’s daughter, Haven, is autistic.
‘She’s the most likeable person in our family we often say,’ Lucian told the Royal Commission. ‘She has the most friends out of all, like all the parents at [kindergarten] know her and she’s always getting [invitations to] birthday parties.’
Doctors diagnosed Haven when she was 18 months old.
‘Then started our journey on the NDIS,’ Lucian said.
When he first applied for the NDIS through a service provider, Lucian ‘really struggled’.
‘The first thing that happened was they lost that application for a year … We were being told that we were going to have to resubmit … It really felt like we were being made to suffer and it was already a very confusing time.’
Lucian said he had to quit his job to navigate the bureaucracy and care for Haven.
‘It got to a point where we were spending so much time trying to find a path through and it was taking a lot of time away from [Haven], trying to give her services and trying to tend to her, that there was just a point where we threw our hands up.’
When doctors first diagnosed Haven with autism, Lucian said public hospitals were a ‘one stop shop’ for services. He said now, even with an NDIS plan, accessing suitable services is more difficult.
‘We’ve had lesser supports, we’ve had lesser quality, the prices of things have gone up.’
Lucian said many providers are ‘really about trying to sign you up, trying to take the max amount of money off you … like being circled by a gang of sharks’.
One service provider, for example, charged $370 for an interview, but wouldn’t provide the services Haven needed.
‘So we ended in this horrible loop where we would … end up getting two sessions in and none of the things that we asked for would we get.’
Lucian said his family is still suffering financially and emotionally.
‘It’s been three years [and] the only money we’ve been getting is government money for our being carer, and so we’ve suffered. We’re in a shitty rental. Like, it’s put our lives on hold.’
Lucian said the NDIS, in supporting people with disability, needs to support families.
‘The mental and physical health and wellbeing of everyone in the family contributes to [Haven’s] wellbeing. [Haven] needs to have happy parents who are able to get up and meet every day with positivity and strength. [She] needs to have a brother who doesn’t feel depressed and overwhelmed with a lot of what’s going on. That’s part of her wellbeing.’
Despite the family’s struggle, Haven is about to start school and Lucian is ‘overjoyed’.
‘I’m a very lucky man,’ Lucian told the Royal Commission. ‘I didn’t want my testimony to be really dark. There’s a lot of positives to our situation and we’re living a beautiful life with a beautiful family and that’s the cornerstone. The NDIS should be helping us do that, ultimately.’
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.