Sheridan and Anne-Maree
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.
‘I think the NDIS don’t realise that there are participants who will be on the system for their whole life and that their development is very slow and they do require a lot of assistance, but the value of their life is the same as everybody else.’
Anne-Maree is the mother Sheridan, who’s in her teens and lives with a rare genetic mutation that causes developmental delay and intellectual disability.
Before the NDIS, Anne-Maree struggled to find an organisation able to fully support Sheridan.
‘I had been supported with an average of eight hours a week for her condition, which was not enough and led to a lot of mental health problems for myself and my husband,’ Anne-Maree told the Royal Commission.
When the NDIS started, Anne-Maree spent 18 months preparing Sheridan’s application.
‘I had done everything I thought was required … to represent her needs and wants and dreams.’
Several months later, the NDIA refused most supports as being ‘not reasonable and necessary’.
‘We asked for some extra support of about 25 hours a week plus wheelchair, shower chair, change table, some of these basic things … and these items were identified by her therapists and ourselves as lasting a long time and provide her with the goals of capacity-building and a quality life. They were all denied.’
Anne-Maree asked the Administrative Appeals Tribunal (AAT) to review the decision.
‘The entire process with the AAT was just stalling. Every time we had a case conference they were late, needed an extension … That was about a year of just going back and forth and we got nowhere.’
After Anne-Maree described Sheridan’s plight to politicians, the NDIA approved the supports and equipment she asked for.
‘[But] the process ended up in neglect for [Sheridan]. She was at risk of seizures that are life-threatening. It put my family in a horrible situation … Without her family she would not have – I don’t think – survived, to be honest.’
Anne-Maree now manages Sheridan’s plan, often with little guidance from the NDIA or help from service providers.
‘I stay away from providers, to be completely honest, when it comes to support workers, because they can't provide continuity of care. They cannot provide the skill levels that are required.’
Anne-Maree said the NDIA seems confused about the ‘extremely blurry’ line between medical conditions and disability.
‘It's so mind-boggling what we can and can't do for these complex kids that have health and disability concerns … So [Sheridan] has seizures, which is on the list. But some things can't be included.’
Anne-Maree said she’s dreading the next review of Sheridan’s plan.
‘Her condition is becoming more challenging … I'm just quite scared that they'll come back and say we don't need funds, “We're going to take some [back].” Yeah, and I don't need the pain. I think that's what I want to share. We want to be supported.’
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.