Seth and Ula
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.
Seth was diagnosed with dyslexia, dyspraxia, dysgraphia and anxiety four years ago. He is 12 and has difficulty with literacy, numeracy and gross and fine motor skills. His learning differences are known as specific learning disorders (SLD).
Seth struggles to find balance and maintain correct posture.
‘Simple childhood joys such as swimming [and] bike riding were hard won skills,’ said his mother Ula.
Yet it is not SLD, but the ‘lack of education, empathy, skills and support within the education system’ that has ‘the largest impact’ on Seth’s self-esteem. His anxiety has resulted in physical symptoms such as skin rashes, headaches and bed wetting.
Ula told the Royal Commission that a person with SLD is not eligible for NDIS funding. There ‘is little financial support through private health funds’, so she funds Seth’s therapy herself.
Each week Seth attends speech and occupational therapy and sees a psychologist ‘to build skills and self-belief’.
He attends therapy outside school hours. They live in a rural area so it is a one-hour round trip to all therapies. Without therapy Seth regresses.
When Seth started high school, Ula investigated private tutoring options and ‘had to navigate a myriad of questionable providers’.
When she asked about a schedule of fees, tutors told her she ‘needed to accept “special needs kids are expensive”’. When she asked about realistic learning milestones aligned to the school syllabus, tutors tended to be ‘vague’.
‘I understand funding for these kids is challenging but the current situation where they simply fall through the cracks … is not acceptable nor humane. Especially when others receiving NDIS can use funding for horse riding lessons, swing sets or trampoline purchases … SLD kids receive nothing and their teachers do not have capacity, skills or knowledge to help.’
Fortunately, Ula found several school counsellors who have been supportive and provided key advice and guidance.
‘Without these individuals I would have given up on the school system entirely.’
Ula also found support groups provide ‘fantastic resources and recommendations and a sympathetic “shoulder”’.
‘Professional private services we have engaged have also been wonderful but I am conscious that I am in a situation where I have a well-paid job and have the option to take up these services albeit at significant sacrifice. Others are not so fortunate.’
Ula believes neurodiversity is essential and would like educational support systems to be truly inclusive – not for the few with certain diagnoses.
‘My hope is that, with support, all neurodiverse persons will feel they can lead fulfilling lives as valued members of our society.’
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.