Timmy and Flora
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.
Timmy is in his 30s and needs ‘one-on-one support round the clock’, his mother Flora told the Royal Commission. He is autistic and has schizoaffective disorder.
‘Mainly there's an impact with his emotional regulation and impulse control, learning and executive functioning. This complex interplay of my son's intellectual disabilities, autism symptoms as well as a mental illness, makes it very difficult to manage his emotions within the home and in public.’
Finding staff trained ‘to communicate effectively’ with him ‘has always been a problem’. ‘Family have always supported him,’ Flora said.
Timmy lives in a unit attached to a group home.
‘The accommodation is not appropriate. They can't source support workers, so there are gaps in his care. For nine hours every 24-hour period he's not supported. That places my son in a vulnerable situation because he self-harms a lot.’
For Flora, a big part of the problem is the NDIS.
‘Family were approved originally to be paid formal supports by the NDIA in order to seek and source the appropriate staff. The NDIA very abruptly ceased that without even letting us know. My son was left unsupported, unfunded for over a month.’
When Timmy’s plan was reviewed a couple of years ago, Flora insisted on the family being involved.
‘I believe families should be acknowledged and paid if they are the best support staff that can support the family member. I truly believe that has to change.’
She and her other son are both ‘qualified workers in disability and mental health sectors’.
‘The NDIS didn't take that into account. We asked for a 12-month period of transition so family could be paid until the appropriate support workers were found. We asked for the plan to be plan managed as opposed to NDIS-managed, as the plan was incredibly rigid to the point where we could not access the funds … We asked for increased transport funds, increased support coordination funds. Everything was rejected … Which meant that only service providers that were registered with the NDIA could support him and only two service providers were named.’
The family took the case to the administrative appeals tribunal.
‘We fast-tracked it on the basis that it was life-threatening. [Timmy] was experiencing neglect because of poor supports, he was not receiving his medical care. And we had a report from his GP stating that.’
The NDIA rejected evidence from Timmy’s psychiatrist, occupational therapist and behaviour support practitioner ‘stating the importance of him receiving family-supported care’.
Flora said the whole process was traumatising.
‘We were condemned before we even started. They did not look at my son and his situation and how we can fix it. It was more about targeting the family. It was incredibly unjust.’
Timmy’s new plan nominated five providers.
‘So again, it's reducing the pool of workers for us. There is no choice and control in our situation. They have dictated to us their terms.’
Flora feels the NDIS should be plan managed ‘across the board’.
‘Until today we still have this problem, we cannot find support staff. If we don't have the right workers who can understand the complexity of my son's disabilities, that is placing my son's life at risk.’
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.