Bernie
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Bernie is in his 30s and lives with attention deficit hyperactivity disorder, diagnosed a couple of years ago.
Bernie is also a disability advocate. He told the Royal Commission about working in regional and remote communities.
‘The barriers in place for any person like me accessing the Disability Support Pension are already enormous. Add to that a thousand kilometres of unfathomable roads, and also the fact that there are no mechanisms to get the things that are needed to make the application in the first place. It's purposefully designed to be inaccessible.’
Bernie said remote First Nations communities are especially disadvantaged because ‘poverty-stricken groups … don't fight for themselves a lot because they don't have [the resources] and they don't know how’.
Bernie said people with disability in remote communities are more prone to losing their independence and being ‘predated upon’.
‘It's all service provision out there. The [service providers have a] very maternalistic, paternalistic idea of what health care should like, rather than involving people in their own journey.’
Bernie said before the NDIS was rolled out, services in remote communities were already expensive ‘just by the fact that it is so far away’. Now, there is often only one service provider for a community, removing an individual’s choice and control.
Bernie said, for example, conversations about an individual’s needs often stop after they’ve seen their doctor.
‘[The doctor] will have this conversation with the participant, and then they will put that into their report, and that will go down to the service delivery people.’
Bernie said because there is little privacy in small, remote communities, participants often turn up to NDIS meetings alone, without a key support person.
‘If someone has shame or guilt about what is wrong with them, and what they need help with, then they are going to leap at any opportunity to not have to talk about that in front of people.’
Bernie said participants are often ‘prevented from accessing the thing that they need’ and given supports they don’t need because they go to meetings alone, without a key support person. They feel powerless to object.
Bernie said support people should be mandated ‘for NDIS interactions of any kind’ in remote communities.
‘Whether it is mum or grandma, or uncle, or, you know, a school teacher, or a case manager or someone who knows them who they feel comfortable with talking about it.’
Bernie said it would help stop ‘pencil-pushers from burying or disagreeing with health practitioners' recommendations and treatment plans and advice’.
Bernie said recently an NDIS officer told a client to ‘lose weight’ before she could access supports for her disability.
‘Osteoporosis and osteoarthritis … make it hard for her to walk around or cook her own food, or go and do her own shopping. And the decision officer, who was not a health practitioner person, told her she needed to lose weight, and then she wouldn't have a disability anymore. That is happening a lot.’
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.