Aylin and Jaime
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Three years ago Aylin, mid-30s, went to work on a Friday, experienced chronic headaches, went to hospital and never went to work again.
Her husband Jaime told the Royal Commission it was ‘just something that came out of the blue’.
Doctors diagnosed Aylin with postural orthostatic tachycardia syndrome (POTS). During an attack, her blood pressure drops rapidly and blood can’t get to her brain. She experiences cognitive issues and faints. Repeated attacks damage her nervous system and cause mobility issues.
Needing support, Aylin applied for NDIS support.
She and Jaime said the process was long, frustrating and not transparent. Each time they contacted the NDIA about the application ‘everything was progressing’. But after four months the NDIA admitted they had lost the application and Aylin needed to reapply.
The NDIA initially rejected Aylin’s application. They based their decision on an assessing doctor’s ‘well wish’ that she might be one of the lucky ones who recovers.
Jaime said most people reading the report would interpret his words as a nice way to ‘sign off’. The doctor clearly believed Aylin’s condition was permanent, making the point that less than five per cent of people recover, and they are usually teenagers.
Aylin applied for an internal review. The NDIA confirmed the original decision saying, ‘We googled it and you've just got blood pressure problems.’
Aylin and Jaime felt completely dismissed by these processes.
‘The staff within the NDIS have little to no understanding about complex health conditions,’ Jaime said.
‘[Aylin]’s cardiologist is not only one of the top specialists in the country, but in the world in POTS, and until they essentially have someone of his calibre to say that she’s not a total and permanent disability, then I can’t see how they can reject it.’
Aylin appealed the decision, taking the matter to the administrative tribunal. She said she and Jaime found it difficult to find out information about the process, and community-based organisations had limited capacity to assist.
Lawyers represented the NDIA, whereas Aylin and Jaime represented themselves.
‘[Aylin] found it humiliating through the process because she had to prove her disability through a range of physical tests as opposed to what she had been diagnosed with by her medical specialists,’ Jaime said.
After 18 months, the NDIA eventually conceded.
‘And in that time,’ Aylin said, ‘I regressed to the point I was at hospital three times a week because I had no early intervention or no help.’
The NDIA approved limited support but refused to fund the home modifications Aylin needed to retain some independence.
Jaime took the matter to the administrative tribunal a second time.
Meanwhile, Aylin requested increased allied health support but the NDIA refused to deal with her claim.
‘What they had stated was that the NDIS does not make approvals on any requests or claims whilst there is an administrative appeal in place,’ Aylin said.
Jaime felt he had no choice but to discontinue the appeal.
The NDIA reviewed Aylin’s plan and significantly reduced her funding for mental health and allied health supports. They also removed her ability to self-manage her core funds. Jaime feels these decisions were made to punish Aylin for fighting so hard against the NDIA’s earlier decisions.
Aylin said NDIA staff often suggested she ask family, friends or even her children to assist with certain tasks.
‘You lose your relationship dynamic. It’s no longer [Jaime] and I, husband and wife. I say to people he’s my carer and then my husband, because he has to do so much for me.’
‘We've lost a lot of friends. People are burnt out from helping us … My parents are in their 60s. My mum’s retired on disability and my dad is pretty much retirement age. We can’t expect them to do everything all the time, but the truth is we do – we have to, we don’t have a choice.’
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.