Maximus and Ros
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.
Ros’s son, Maximus, is in his 40s, autistic and lives with an intellectual disability, obsessive compulsive disorder and depression.
Maximus lives on his parents’ property, in a bungalow in their backyard. During the COVID-19 pandemic, he spent 18 months isolated there.
‘His attitude now is turning basically towards us, that he’s starting to really resent us,’ Ros told the Royal Commission. ‘Hell, it is 18 months we’ve basically been controlling his life, as he thinks, trying to get him the services that he needs.’
Maximus was with the same service provider for about 20 years, until several years ago.
‘We had no problems with them. Then when they amalgamated [with another provider] everything started to go, well, out the window.’
Ros said the new provider overcharged and was unprofessional.
‘We had some invoices that were doubly charged, and when I requested for it to be changed, they turned around and said, “No, we can’t change them and we don’t re-issue invoices.”’
The service provider also cancelled Maximus’s support workers at short notice. Sometimes, workers didn’t turn up.
‘It was affecting [Maximus] because he was getting out of his routines and not getting the services that he actually needed.’
Ros said one day the service provider stopped Maximus from seeing his behavioural specialist.
‘They just said, “It’s finished as of now,” and when we tried to find out what was going on, we got no information.’
The behavioural specialist told Ros they had to ‘concentrate more on the community housing people than anybody else’. But Ros felt ‘they were more interested in the dollar, getting more money with less service’.
Ros found a new service provider.
‘They are, well, I’ll say brilliant. Compared to what we were getting.’
Ros said the NDIA was also difficult to deal with, cutting Maximus’s funding and not explaining why.
‘We’ve asked them and asked them, and they’re not giving us any information whatsoever. They disregarded [specialists] about the support he needs. They basically disregarded all of the reports.’
Ros said every time he asks for a review of Maximus’s plan, the NDIA reduces his funding. He and his wife felt they were was being ‘punished’ for asking questions.
Ros is in his 70s and is worried what will happen when he’s unable to advocate for Maximus.
‘We are getting old, and we can’t be running around with all this … We are trying to get some extra hours to have support workers to start to work for when he goes independent. These have all been knocked back on us. We’re not going to be here one day for him … [Maximus’s] got a lot of complex needs and, as I say, they are basically just ignoring all those things, and it’s getting worse as he goes on.’
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.