When Kim Berry talks about her 24-year-old son Oscar, she describes him as a “golden orb of light”.
“He is probably the most empathetic human you will find,” she says.
She says her son is “the embodiment of goodness”, despite various illnesses, operations and arguments with government agencies.
Oscar has a number of medical conditions including a rare genetic disorder, moderate intellectual disability and cerebral palsy.
And, like more than half a million Australians, he receives assistance under the National Disability Insurance Scheme (NDIS), and has done so for the past seven years.
But things have changed recently.
When Oscar first joined the NDIS in 2015, both Kim and her son were told that they would no longer have to fight for access to disability services.
“It was a promise that, regardless of what your ability was in life, you would be looked after, and would be able to access the services that you would need.”
For seven years, that promise was largely kept.
But this all changed earlier this year, when Kim learned that Oscar’s funding had been cut, drastically reducing his access to the support and care he’d relied upon.
“It just makes me feel sick,” Kim says. “It’s basically cutting Oscar adrift from everything that we’ve just established. There’s not enough funding for him to keep up the programs and the things he does every day.”
Oscar’s experience is not isolated.
Earlier this year, it was reported that applications for reviews of NDIS decisions roughly quadrupled in the last year, and that the National Disability Insurance Agency (NDIA) spent almost $22 million on legal fees during the 2021 financial year after a 400 per cent increase in complaints.
The promise of the NDIS had been broken.
‘We don’t have to fight anymore’
Before the introduction of the NDIS, those who relied on disability services depended on various agencies that were given “a finite bucket of money”. Kim says it was often a slow and inefficient system.
She remembers how the Cerebral Palsy Alliance once told her that Oscar was “not bad enough” for its services. Instead, he was placed on a waiting list for a physiotherapist and speech therapist.
It took about four or five years before someone got in touch with them.
So when the NDIS came into being, it was a massive relief.
“It felt like we’d been seen… that we were getting recognition on a policy level of just how hard this is and just how emotionally taxing it can be,” Kim explains.
Kim was told that, under the NDIS, Oscar would have a coordinator to advocate for him. “It was like oxygen and [we thought], ‘We don’t have to fight anymore’.”
The benefit of having support like this can’t be understated, Kim says.
“There’s so much trauma when you have a kid with a disability.
“The notion that there was a chance that a part of that trauma, in terms of constantly having to justify why your child needed help, was taken away was just – you could almost taste it.”
But not everything that was promised was delivered. Kim says that, rather than having the same local area coordinator (LAC) to help to apply for funding proposals to the NDIA, they’ve had a new one each year.
“It means every year is reinventing the wheel. So every year, we’re actually back just like we used to be, where you’ve got your little bowl in front of you like Oliver, and you’re going up to the government and just sort of going, ‘Please, can I have some more?'”
‘Look, it’s not good’
Despite these frustrations, Kim and her LAC would submit an annual proposal and Oscar would be provided with access to services through the NDIS.
But this changed when Kim received a phone call in April.
“[I] got this phone call from the LAC who had submitted our [proposal]. And she said ‘Oh, so I’m guessing that you’ve seen the plan now?’ And I went, ‘No’. She said to me, ‘Look, it’s not good’.”
In previous years, Oscar was provided with support including access to carers every weekend, weekday activities and access to a therapeutic gym program run by the Cerebral Palsy Alliance.
But now, Oscar’s regular weekend program has been reduced to one weekend a month, his weekday activities slashed in half and his gym access cut completely.
Kim had also requested extra respite days and nights with his regular carers to help her son move into independent living.
However, in response, she was offered a respite of six Saturdays a year. She says this accounts for only six hours at a time.
Kim says she was told that the funding to help Oscar move into independent living was rejected because they didn’t use the money allocated in 2021 – the year of the COVID-19 pandemic and ongoing lockdowns.
In a statement to the ABC, the NDIA said: “NDIS funding considers a participant’s required support needs going forward”, and therefore “plan utilisation (how much of a plan is used) during COVID-19 did not affect participant plan values”.
The NDIA has also previously said that there has been no directive for NDIS cost cutting.
But Kim finds this hard to believe.
“We can look at the figures of just how many appeals there have been. And anecdotally, from where we sit, it would be one in two of [every NDIS applicant] that is having our plans completely decimated.
“You know, these are people. This is Oscar’s life.”
Life in limbo
Since Oscar’s funding was cut, Kim says her son has been in limbo.
She says the NDIA told her they “rejected everything” because she had not supplied a medical certificate and that Oscar must undergo a cognitive function assessment before his funding can be reassessed.
“Oscar has a rare genetic disorder, a moderate intellectual disability, verbal dyspraxia, cerebral palsy, epilepsy…the last time I looked none of those things go away. So at 24, how often do we have to get a medical report to prove he has a disability?”
“And to actually get an appointment is really difficult…back to pre-NDIS [levels]. [I] can’t see us [getting] a re-evaluation before next year.”
She also doesn’t know how she can tell Oscar that he won’t be able to live the life that he was previously living.
Things have seemed more promising in recent months.
In June, NDIS minister Bill Shorten promised that his party would look at “some of the long term pressures” facing the scheme.
In September, it was announced that wheelchair athlete Kurt Fearnley will lead the NDIA board.
And in the statement to the ABC, the NDIA spokesperson said that the agency “continues to provide disability-related support to Oscar”, and that it had been in contact with his family earlier this month “to discuss their concerns with his NDIS plan”.
But while these developments are positive, promises have been made before.
“I can’t explain … the weight that I feel from this. It’s like this shadow that just follows me everywhere. What’s going to happen? What’s going to happen if we don’t get the funding?” says Kim.
“I’m just so tired. So tired of fighting and proving just how amazing this young man is, but that he needs support to truly realise what he’s capable of.”
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