Trish and Ali
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.
Trish, early 30s, has epilepsy and was recently diagnosed with functional neurological disorder (FND).
Not long ago left an abusive relationship and, since then, has had sole custody of her two children.
Trish’s son, Ali, has sensory processing disorder, speech and language delay and can become overwhelmed. Trish told the Royal Commission she is struggling to access enough support for her and Ali.
‘I'm trying to push myself to keep doing things, but without that extra support. Mum can't keep being my carer and my backup forever.’
As a child Trish was ‘spacey’ and in her teens started having absent seizures. A GP advised against treatment and suggested she wait to see if things improved.
Trish continued to have epileptic seizures. She couldn’t work and started receiving the Disability Support Pension.
At 35 weeks pregnant with her second child, Trish was away from home when she had a grand mal seizure.
A specialist diagnosed her with FND without considering her full history.
Trish said this diagnosis puts her at risk of losing the disability pension. She’s concerned FND is treated as a mental health issue rather than a neurologic disorder.
A Centrelink staff member encouraged Trish to apply for NDIS funding. Trish paid hundreds of dollars for multiple assessments and the staff member helped her complete the forms. When Trish followed up a few weeks later, the NDIS hadn’t received them. NDIS staff told her she had to complete the forms again and said they would post them to her. Trish has not received anything and has given up pursuing it further.
Meanwhile Trish has been trying to get an autism assessment for Ali. She paid $2,500 for an assessment but discovered it wasn’t recognised. ‘Autism has become like a buzz diagnosis and a lot of places, there's no regulation … a lot of places will take your money but what you're paying for is like clay therapy, they're not actually doing assessments.’
Ali’s current NDIS plan is due for review. He does not have a plan manager because the funding ran out about three months ago. Trish is not sure how to submit reports because she doesn’t have access to the portal.
‘He legitimately needs weekly speech, he needs weekly OT and he's getting fortnightly psychologist sessions. And without that routine, he goes downhill very quickly and all schoolwork at home stops.’
Although Trish’s mum helps her and her children, Trish is struggling to manage homeschooling Ali, keeping the house clean and dealing with the children when they have meltdowns.
‘We're linked in with domestic violence services … but without that additional support … it is making it very, very hard for me to apply and do everything. I can't keep doing that and trying to homeschool and trying to look after Mum – cause Mum and I look after each other.’
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.