Shona
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Shona is in her 70s and has paraplegia after a fall several years ago. She uses a motorised wheelchair.
Shona was still working and caring for her son, who has Down syndrome, when she was injured. Because she was over 65 at the time, she wasn’t eligible for the NDIS.
Shona receives a $50,000-a-year aged care package.
‘My aged care package, as I’ve said before, I’m very grateful. I get that to pay for the carers, but [the support’s] gone down … to one and a half hours a day because prices have gone up.’
Shona said the cost of disability support services and equipment rose after the introduction of the NDIS, and she’s cut back to save money.
For example, instead of paying a nurse several hundred dollars to change her catheter, which takes about 10 minutes, it’s cheaper to travel to a public hospital.
‘Out of my pension I usually pay about $265 a week on stuff to do with [living with a disability]. That’s before I buy food.’
Shona pays an agency about $400 a month to manage her support package, whereas if she was in the NDIS that fee would be about $100 a month. To buy expensive equipment, such as her wheelchair, she has to raise money.
‘The [aged care package] is taken up completely with wages. [The wheelchair] is $20,000, which my friends and family helped raise.’
Shona uses her superannuation to modify her house.
‘For the last five years my super’s gone down by about $30,000. So, about $6000 a year.’
Shona would like a short holiday to visit her son who now lives in another city, but the cost of disability accommodation with a support service is prohibitive.
‘The cost of staying in this lovely … complex, it’s [more than $700] per night, and if I add the carer it was something like [$1100] per night. Not per week, per night … [but] they’re happy to tell me over the phone, “We’re NDIS covered.”’
If she had been a few years younger when she had her fall, Shona said she would have been eligible for NDIS funding and able to afford the support to continue living an active life.
‘I don’t like whingeing, but when I hear about people that get so much because they’re on the NDIS, as against aged care, it’s so frustrating.’
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.