Kristine
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Kristine, mid-60s, is short-statured, has vision and hearing impairment and uses a cane. She also has a number of medical issues.
Kristine has been an NDIS participant for about six years.
‘My experience in the six years is there’s constant changes that I have no power over or no input,’ she told the Royal Commission. ‘I just sort of feel very much done to, and very much in a place of having to … fight constantly if I’m going to achieve anything. And that’s really exhausting.’
A few years ago Kristine requested home modifications. She had to wait a really long time for the occupational therapist (OT) to do an assessment, and then more time for her to do the report. Kristine had to follow-up with the OT several times to make it happen.
Kristine submitted the report to the NDIA and didn’t hear a thing.
‘There were no updates, no feedback, absolutely nothing.’
She contacted the NDIA several times and, while staff were ‘helpful in general’, they were not able to give her any information about her application.
Eighteen months later the NDIA phoned her and told her ‘the home modifications have been knocked back’. The staff member was very unhelpful and didn’t seem to know why.
‘That was a really, really stressful and really difficult time where I was just not told anything.’
Kristine contacted another NDIA staff member, who couldn’t tell her a reason or summarise the decision.
‘I had this email saying, “I can send you a 360-page document” – and I really struggle with my vision and with lots of words on a page.’
Kristine’s support coordinator and OT discovered the NDIA had issues with the kitchen and bathroom modifications.
Kristine put in another application. This time the NDIA approved the bathroom and ramp but not the modifications to the kitchen.
Kristine couldn’t understand the decision.
She said she’s four feet high and can’t use the benches, oven, top storage, dishwasher or microwave.
‘It was just the cheapest revamp of the kitchen that was possible and lowering all the lower part, and a redesign, putting a lower bench where I can sit down and work, particularly cutting vegetables, because I get really dizzy standing up.’
Kristine ended up paying for the kitchen herself.
‘It just showed a complete lack of my needs and … a complete disrespect to all the hours that the OT had put into this, with measurements, photographs of me and a 40-page report.’
Kristine said she receives insufficient support coordinator funding, and the constant turnover of support coordinators makes things more difficult.
One support coordinator overspent Kristine’s core funding and refused to pay the OT, her doctors and other services. One service provider cancelled her supports. She was without hearing aids for several months while she tried to sort it out.
‘I then had to fight for another six months to try to get information to try to get those people paid. And, of course, that’s not my job.’
Kristine unsuccessfully tried to get the local area coordinator to help.
‘She just said, “I can only have contact with you during your planning meeting. End of story.”’
Kristine said dealing with the NDIA is difficult because ‘it’s quite complex’.
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.