Caden and Alena
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.
‘My son [is] resilient, brave and strong. It has been an extremely hard year for him.’
Alena’s son, Caden, is in his early 20s and has complex health issues, severe intellectual disability, visual impairment, epilepsy and cerebral palsy. He has trouble speaking and difficulty regulating his emotions. He falls a lot and uses a wheelchair.
‘He is completely dependent on others for all instrumental activities of daily living,’ Alena told the Royal Commission.
A couple of years ago, Caden attended a day program run by an NDIS provider. Alena said one day he was left alone to eat his lunch, against the recommendations of his health care plan. After lunch, he was left alone to sleep on a couch, where he had a seizure.
‘His health care plan clearly states the signs and symptoms and that he should be observed at all times.’
When Caden’s sister came to take him home, she couldn’t wake him.
‘[Caden] is found to have food from lunch on his clothes, sputum on his top and he has been incontinent of urine. Again, the signs of [Caden’s] medical condition [were] noted in his health care plan [as was] the required action to take place. No action was taken.’
His family took him to the hospital.
‘[Caden] was taken directly to the emergency department presenting in a life‐threatening comatose state.’
He recovered. Alena removed Caden from the day program because, she said, it had no medically trained staff and couldn’t manage his health issues.
Alena complained to the NDIS. She still hasn’t received a satisfactory response nearly two years later.
‘The NDIS process is so complex and a constant battle.’
She said the NDIS put the onus to keep the family informed of the progress of the complaint on the NDIS provider against which the complaint was made.
‘[That] raises many questions and deep concern.’
After Caden’s experience, she was reluctant to place him again in full-time care.
‘We fear he would die painfully if left in full-time care. My husband and I work full-time, we just need some support, and [Caden] deserves some independence. The lack of accountability [from the NDIS and the NDIS provider] is appalling. Unless you go through this process you wouldn't believe it actually happens.’
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.