Leonel
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‘The NDIA, once they get through these problems and make it sustainable, I think it’s going to be a brilliant thing, but at the moment it is soul crushing.’
Leonel is in his 50s and is blind, has diabetes and uses a wheelchair. Leonel shares a house with flatmates, including his ex-wife.
‘The only reason we’re sharing is because rents are very hard and [we’re on] limited incomes,’ Leonel told the Royal Commission.
Leonel is support by the NDIS, which initially insisted his flatmates care for him and refused to fund support workers.
‘They were saying, “No, she’s your ex-wife, she has to do everything for you.” … They’re saying, because I had the people here, I had to rely on them.’
Leonel said that included showering him.
‘Everything. Cooking, everything, and you know we had been separated for a number of years before I got on NDIS.’
Leonel’s said the NDIS also refused to fund anything that wasn’t related to his blindness.
‘I have multiple disabilities. I’m blind, I have diabetes, I have neuropathy really bad to where when I go out I have to be in a wheelchair because of balance and not having sight. I’ve had a number of falls … They just kept saying that they only just looked at my blindness, not my whole disability.’
Leonel can’t feel with his hands and feet and has trouble with fluid retention. When he asked for a special chair and bidet to help him manage his continence, an NDIS officer told him he didn’t need the equipment.
‘They said … well it’s cheaper if you wear pull-ups and urinate yourself out in public and I said, “Would you do that?” And they go, “Well, no, we wouldn’t, but it’s not about me.” You know, so that was pretty hard.’
Leonel said he had to complain to the Administrative Appeals Tribunal before the NDIS recognised his other disabilities.
‘And that really upset me because everything was reasonable and necessary to ask for. Why did I have to wait all these years? And how much money did that waste? … Like, I had to write assessments again and again and again, and they’re expensive and it was the same stuff being said all the time.’
Leonel now has an NDIS plan that’s helping him ‘be more independent in [his] house’.
‘My flatmates and I, the stress has gone now because I’ve got the support that I need and it’s working well here. But the biggest thing is, I’m worried and I do stress about … all the funding cuts. You know they put it in and then they cut it.’
Before being supported by the NDIS, Leonel said he sat at home ‘pretty well isolated’.
‘[Now] I can get out in the garden with support, because I do a full veggie garden with trees and everything and the support workers help me … [It’s] those little things that make me feel a part of the community again, if you know what I mean.’
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.