Ramon and Alora
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.
Alora is a single parent with three children. Her son Ramon is in primary school. He is autistic and lives with anxiety and obsessive-compulsive disorder.
Doctors diagnosed Ramon’s autism a few years ago. Alora had known for many years ‘something was up’, and had already quit her job and university study to care for him.
‘He eats a pair of socks every day, literally eats the whole pair of socks, it's bizarre. He'll eat his shoes, it's severe, severe. He'll chew up cables. And the costs associated with that is huge. During meltdowns he's broken down doors … he'd have these massive meltdowns and he'd smash his head and knock himself unconscious.’
After waiting years for a diagnosis through the public health system, she borrowed money for a private assessment.
‘We were at crisis point … There seems to be such a big shortage of people who can help with diagnosis at a decent cost. I mean, it was like two and a half grand out of pocket for me to pay for that. And on a single parent pension that is a massive amount of money.’
Ramon’s diagnosis gave him access to the NDIS.
‘They've given us funding which I'm very grateful for, don't get me wrong, for support workers. It's just not working.’
Alora said Ramon won’t let the support workers dress or feed him, or give him his medication.
‘He refused to eat it because [the support worker] touched it, so it was contaminated. Only Mummy's allowed to touch it. Just everything they tried just didn’t work.’
Alora said better support would be helping with housework and the other children while she feeds and dresses Ramon, ‘because my house is just a disaster’.
‘I basically don't stop between the three kids and [Ramon's] appointments and everything going on. And they said, "No, that's parental responsibility."’
Alora said the NDIS doesn’t understand Ramon’s complex behaviours and how to help her manage them.
‘They kind of clump together each disability and [say] like, "Yeah, kids with autism need this, this and this" and then when you ask for something outside of that, they're like, "No, well he doesn’t need that."’
Alora says managing Ramon’s NDIS plan is ‘more stress than it's worth’.
‘Every time they want me to do carer's statements and this and that, and I've got to gather all the reports and it's just very stressful … I don’t have time to sit down and read and understand fully all the legislation. It's not explained. It's not clear what you can claim and not. I'm constantly worried.’
Alora said she survives as a single parent only because her parents let her rent a house that Ramon is ‘destroying’.
‘I can't work. I can't earn an income. I can't earn any more super, and I've had to withdraw it all. So I've got like zilch left … There's no near point in me returning to work. I've got no assistance. The stress.’
Alora said if she had more money she would choose Ramon’s supports and pay for them herself.
‘I would just be like, "No, I'm not dealing with [the NDIS] anymore." … Obviously, I don’t have the money to get him private therapy and so I just kind of have to accept it.’
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.