Cayden and Annalise
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.
‘Not knowing year to year if he will receive sufficient funding … is frightening to say the least.’
Annalise is Cayden’s advocate, NDIS plan manager and mother. She told the Royal Commission she has to fight for Cayden’s NDIS funding to be maintained every year.
Cayden has autism, intellectual disability and a complex bowel disorder. He’s in his late 30s, lives alone in a unit he owns, and is well supported. He works in supported employment, volunteers in the community and is a keen swimmer.
Annalise stressed Cayden could not contribute to the community and achieve all he does without his support staff and family.
‘He can present as being capable,’ Annalise said, however when he experiences sensory and communication overload and pain ‘he will become extremely anxious and starts yelling’ and then gets depressed.
Each year Annalise discusses Cayden’s NDIS financial plan with local area coordinator (LAC) staff. She provides supporting documents from his specialists and they review his goals and how he is managing his life. The LAC staff take the plan to the NDIS.
Cayden’s financial plan is always reduced, Annalise said.
The first time it happened she requested an internal review. Although she employed an advocate – the NDIS prefers to deal with someone who is independent – they were unsuccessful.
Annalise engaged lawyers and appealed to the administrative tribunal. It took several months and ‘was a very stressful time’. Moments before the hearing the NDIS made an offer Cayden and Annalise could accept.
Next time, as soon as Annalise requested an internal review she advised her local member of parliament. She hoped to avoid months of legal proceedings.
The NDIS rang while she was grocery shopping and asked what level of funding she required. She asked if she could ring back when she had the financial documents with her. The staff member told her she needed to do it ‘right now’. Annalise responded that ‘it was extremely inappropriate to discuss the matter publicly’ and without the figures she said ‘same as the previous year’. The staff member agreed and advised they would send through a new plan.
Annalise and her husband are getting older and would like to stop being so intensely involved in Cayden’s life and ‘just be his parents’.
However the NDIS policy ‘to constantly reduce [Cayden’s] funding’ places him at risk, she said. His health, safety, wellbeing, opportunity to work, volunteer and socialise would be reduced. Annalise fears Cayden will not be able to continue to live in his own home and will have to return to shared supported accommodation – ultimately costing the government more.
Annalise believes the government sees people with disability only ‘as a burden on government’s finances’ – not as people who contribute to the community. ‘I feel the Government rough rides over people with disabilities,’ she said.
Annalise is currently preparing for another administrative tribunal hearing.
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.