Kaite and Victra

Kaite, late 50s, was born with an intellectual disability. Her older sister Victra said Kaite has the cognitive age of a six or seven-year-old.

‘In those days, when she was born, she was classed as moderately retarded. That was just the classification they used in those days. They didn't really drill down into syndromes and whatever. So she also had congenital physical disabilities, but these were never labelled because genetics as we know it was never explored in those days,’ Victra said.

Kaite lives alone in her own home in a small regional town. Before that she lived in a group home for many years. She moved when the NDIS was introduced and it seemed that she would have a better quality of life living independently.

‘We would never have taken her from her group home, where she was at least supported and in some ways protected, had we realised that the NDIS would fail her so dramatically.’

Kaite receives NDIS funding for her intellectual disability but not for her physical issues, which the NDIS deems ‘medical’. The funding is for capacity building. But most of it goes on the support Kaite needs to manage her physical conditions, for which she needs to see her GP every week.

‘Someone without capacity and without the physical wherewithal and without the taxi service – the taxis won't take her – she can't physically get herself to a doctor. She can't really understand the doctor's instructions ... So the service [provider] actually has to redirect the funding that should have been used for capacity building and goal setting and achieving her goals and all these lofty ideals that they trot out, in taking her to the doctor.’

Victra said Kaite is ‘severely underfunded, even for her intellectual capacity’. She has asked for a range of supports for Kaite that the NDIS planner won’t even consider.

‘The last plan review that we had, we were no further than 10 or 12 minutes into it when she said, "No, I'm rejecting your plan. You can apply for a review if you like." You know, "The reports aren't sufficient. I suggest you get another OT, a different OT, to write a different report."’

Victra has organised OT reports from every OT in the area and one visiting OT.

‘They keep rejecting all the reports we give,’ she said.

Victra asked for a support worker to help Kaite develop an eating plan and prepare healthy meals, and the answer again was no.

‘NDIS says, "That's not value for money. Get her to order in Lite n Easy or something." So, don't teach her anything, don't give her skills, don't, you know, inform her about her health situation, how it can be enhanced with food. No, just order in some meals. That was their thing … “It's not value for money to have a person there.”’

Kaite has been sexually assaulted several times in her home. In each case her assailant was someone she’d met through their shared disability services provider.

‘The police virtually told us that there's no point really taking it to court because [the perpetrator] lacked the capacity for understanding right from wrong and nothing would be done,’ Victra said.

She said better funding from the NDIS would have made a difference.

‘I really believe that had [Kaite] been funded and supported, even in behavioural therapy, assertiveness training, all that kind of thing, personal safety – all of the things that she could have had capacity building in if she'd been granted sufficient hours to have that done, perhaps she could have fought back a little bit, perhaps she could have kept the door closed. You know, perhaps things could have been different.’

Victra has now organised expensive genetic testing for Kaite. She is hoping this will confirm Kaite’s physical disabilities and provide evidence the NDIS will accept.

‘If we can come up with a syndrome ­– it seems to be that if you have a label, that will unlock some funding for you.’