Rohan and Margo
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.
‘Turning 18 should be a celebration, but instead it opens up a minefield for the families of the person with a disability.’
Margo’s son, Rohan, is autistic and has attention deficit hyperactivity disorder and intellectual disability.
When Rohan turned 18, Margo said she was ‘cast aside’ and the institutions that took over Rohan’s care neglected him.
‘Parents need to be seen and listened to, even once the person turns 18,’ Margo told the Royal Commission. ‘They may be legally an adult due to the number of years they have been alive, but mentally they may be many years younger, very vulnerable, and need guidance.’
Margo said Rohan’s NDIS service provider pushed to have a public guardian make decisions about his NDIS services, despite Margo and Rohan saying they didn’t want the guardian involved.
‘The public guardian, in the whole year she was assigned to my son, never met my son and spoke only once to him on the phone … This is a person that is making very serious decisions about a person’s life that they don’t even know.’
Rohan lived with his mother, but when he became violent she paid for him to stay in a nearby caravan park.
‘He did not cope living on his own … and this was communicated time and time again to the provider, [and his] NDIS complex needs coordinator.’
The NDIS told Rohan he was eligible for supported independent living (SIL) funding. Rohan waited more than six months for the SIL accommodation while his health deteriorated.
‘I begged the complex needs coordinator and the public guardian for the SILs process to be sped up, for anything that needed to be done to get started … I just couldn’t get him out of the caravan park,’ Margo said.
As Margo and Rohan waited, the NDIS appointed a new complex needs coordinator for Rohan.
‘She came in and completely turned everything around, stated that because my son was living on his own in a caravan park that he may not need SILs anymore … My son has never met the second complex needs coordinator, and has only spoken to her maybe twice over the phone.’
During this time, Rohan became ‘the victim of a very traumatic crime outside of the caravan park due to his vulnerability’. He also stopped taking his medication.
The NDIS agreed to place Rohan in a SIL house ‘as an emergency placement which was meant to be for a short time’. After a few months, the SIL provider told him to leave.
‘They said they needed him out. We were told that a new tenant was moving in, but I have since found out it was because his funding was running out so it wasn’t financially viable for them.’
Margo paid for Rohan to stay at a motel.
‘He stayed there for two months. His mental state deteriorated, and he became more depressed and suicidal.’
By the time he entered the supported accommodation, Rohan had attempted suicide three times.
Margo said she since discovered that the NDIS had changed Rohan’s plan, removing some of his supports, including his two days of social activities.
‘No-one had told either my son or I that he had lost his supports and services that he had prior to being granted the SILs unit, not his coordinator, not the NDIS complex coordinator nor the public guardian. It has been a disgrace with people not doing their jobs properly.’
Margo’s now worried that, because Rohan must ‘constantly show the NDIS that he is “capacity building”’, he will one day be forced to move into social housing where ‘he wouldn’t last a week’.
‘[The NDIS] website states, “A participant has the right to make their own decisions about what is important to them and to decide how they would like to receive their supports, and who from.” I am yet to see this happen,’ Margo said.
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.