When Jannine Scott first joined her daughter Bethany on the national disability insurance scheme, it was “life-changing”.
The scheme funded in-home support workers for Scott, who has a spinal cord condition, and even paid for a power wheelchair and other assistive technology.
“I am sitting in my wheelchair at the moment, and without that piece of equipment, I would have been housebound much, much sooner,” she said. “But the effort it takes to engage with this part of the government now is becoming wildly unreasonable.”
Like a growing number of people who are complaining about what the federal opposition claims are “stealth” cuts to the NDIS, Scott said her NDIS experience took a dark turn in the middle of the year.
In the latest case where the National Disability Insurance Agency had scrapped supports it had previously funded, Scott said cuts to the tune of tens of thousands of dollars had left the family struggling to cope with daily life.
She is primary carer to two children including a three-year-old, Bethany, 11, and Scott’s mother, who has Alzheimer’s disease.
Bethany, who is home-schooled, was diagnosed with autism at the very early age of 18 months, lives with epilepsy and a rare genetic condition that impacts her mobility.
Scott got onto the scheme two years ago after a rare congenital spinal cord condition worsened to the point she found it hard to walk. Finding a clear explanation for her degenerating genetic condition has been a lifelong journey that continues to this day.
“I first presented with symptoms when I was 16,” Scott, 42, said. “It’s been a gradual deterioration. I got to the point where I was unable to walk very far, I was having a lot of motor and sensory changes. Once they (the specialists) found this congenital spinal cord injury, it became a lot clearer that I need support.”
Yet in June last year, after a year on the NDIS, Scott received shock news: the NDIA had refused to continue funding supports related to her spinal cord injury. They now claimed there was a lack of evidence it was permanent.
That was despite the fact the agency had already paid for a power wheelchair, in-home carers, and other assistive technology in a previous plan.
Scott’s funding was instead allocated on the basis of her other psychosocial disabilities, and reduced by about $20,000 a year on a pro-rata basis.
“It certainly feels very different from what it was when Bethany first started on the scheme,” Scott said. “It feels like every time you interact with them it’s combative rather than supportive.”
But the bad news was only just beginning. In a letter sent to the family three months later, Bethany’s plan was also cut.
Bethany’s “core supports” funding, used to pay for things such as in-home support workers, was slashed dramatically from $86,234 to $600 over 12 months. It meant there was no support at all for in-home care for Bethany, while Scott was also dealing with cuts to her NDIS plan.
Those changes – contrary to the recommendations of Bethany’s paediatrician, according to a letter seen by Guardian Australia – were upheld by the NDIA in a new plan last month.
The NDIA told Scott in a letter that support workers would not be funded because some of the tasks they assisted Bethany with were considered a “parental responsibility”.
Scott said she was told that while Bethany’s funding should fall for this reason, her own package would increase to provide more help around the house.
Except, of course, that three months earlier, Scott’s own plan had already been cut.
Bethany’s funding was boosted for therapies, and for support to help with community engagement and skills building.
But the plan initially stated it could no longer be used to fund Scott’s preferred allied health professional: a developmental educator that her daughter had been seeing for more than a year.
After inquiries from Guardian Australia, the NDIA clarified the funding could be used “flexibly, including for a developmental educator”.
A spokesperson for the NDIA said plans could go “up or down depending on an individual’s changing disability-related needs, that is how this insurance Scheme was designed”.
“These are independent NDIS decisions based on specialist advice and the participant’s individual circumstances at that time,” the spokesperson said.
“There are many factors that might result in a participant’s plan value changing depending on their support needs and changes in life circumstances.
“It is important to note Ms Scott and [Bethany] continue to receive a significant amount of disability-related funding from the NDIS.”
The spokesperson said if “sufficient evidence” was provided to the NDIA to “substantiate the requested levels of additional disability-related health support, the NDIA would then be able to consider changes to Ms Scott’s plan”.
Last week, new figures revealed a 400% increase in the number of families challenging NDIA decisions at the Administrative Appeals Tribunal in the past six months.
Scott was still fighting the cuts but was hoping to avoid what she described as the “cruel” AAT process. She said she now had “significant anxiety” dealing with the NDIA.
“Anything that was making Bethany improve and making her have a better outcome in her life were taken away from her,” Scott said. “That was the opposite of what the NDIS was supposed to do.
“[Bethany] has trouble with her physical mobility now, she can’t walk for long distances, she’s gone through a significant amount of weight loss and muscle loss over the past six months,” Scott said.
She was increasingly “disengaged” and did not want to leave her bedroom.
The family has been supported by Syndromes Without A Name (Swan), an organisation that supports families caring for a child with an undiagnosed or rare genetic condition.
Its chief executive, Heather Renton, said more training was needed for NDIS planners to recognise undiagnosed or rare genetic conditions.
In Scott’s case, the reduced hours of in-home care had coincided with “more significant mental and physical fatigue”.
“I need help seven days a week and I don’t have the funding for that any more,” Scott added.
“Simple day-to-day tasks like cooking and things like that, I can no longer do. Being Bethany’s primary carer, it makes it extremely difficult.”