Appropriation Bill (No. 1) 2025-2026

Ms PENFOLD (Lyne) (11:49): When the NDIS was created, many saw it as a beacon of hope and progress for people living with a disability and for their families. Family members instead come to me distressed, desperate and demoralised as they struggle with a system that seems to have replaced its mission of care and dignity with antipathy and apathy. I'd like to share with you the story of Marie and her son, Harry, and the battle they have with the NDIS behemoth.

In 2021, Harry was diagnosed with an extremely rare genetic disorder known as Rahman syndrome, which causes a range of developmental, intellectual and cognitive deficits. Marie thought that this diagnosis would herald an NDIS journey characterised by care and value. How wrong she was.

In 2022, Harry's funding was cut by more than 60 per cent by an NDIS planner. Despite countless representations by Marie, new costly reports from Harry's medical team and evidence of his diagnosis and difficulties, Marie's attempts to have her son receive adequate care were met with resistance and contempt, being told by a planner: 'I have the power to decide what Harry gets.

If you don't like it, you can go to the tribunal.' With only one option left, Marie went to the AAT—a step that led to the most challenging period of her and her husband's lives. Marie and Harry were subsequently assigned an NDIS AAT case manager, who, instead of supporting them, was combative, hostile and admonishing. During initial conciliations, the NDIS case manager asked Marie, 'What kind of incompetent and inadequate parent can't even toilet train their child?' She accused Marie of using too many continence supplies and directed her to stop giving her son water—unsolicited medical advice—all the while refusing to acknowledge Harry's complex diagnosis and extremely high level of need.

Following this, Harry was admitted to the paediatric intensive care unit at John Hunter Hospital with a life-threatening infection. Doctors were preparing Marie and her husband for the worst. During these first few horrific days, Marie received an unscheduled call from the AAT case manager who screamed at Marie over the phone, threatening her with, 'You'll get nothing; I'll see to it,' and callously asking Marie: 'What's his prognosis?

Is he going to die?' Fast forward 86 days and Harry is finally released from the hospital. Marie and her husband are providing all of Harry's care around the clock, with little to no sleep, all the while still having to fight to get Harry care. Marie says that, eventually, after 2½ long years of combative, hostile belittling, soul destroying accusations and demeaning comments, and 756 pages of reports and evidence—and I can only imagine how many hundreds of thousands of dollars of taxpayers' money—they were worn down to the point of settling with the NDIS after an extremely distressing conciliation, where their AAT case manager warned, 'If you proceed to court, the NDIS will remove Harry from your care.' Harry currently has an NDIS plan that is workable and almost adequate for his needs.

Marie and her husband have gradually started to implement the supports they fought for, only to be told that they must start the whole process again, as Harry is due for a plan review. Marie says that Harry is profoundly disabled and that will never change. Marie and her husband provide around-the-clock care for Harry.

They get an average of three to four hours sleep a night. They monitor his diabetes every two hours. They do wound care and continence support.

And they say: 'We don't mind. He's our baby, and we love him, but we cannot do it alone.' Marie's story highlights the broader systemic failings of the NDIS, showing how its processes can undermine the very people it is meant to serve. Marie says: It is clear in Harry's medical documentation that his disabilities are life-limiting, but instead of spending time and making memories with our family, I must waste my time fighting this David and Goliath battle that consumes and controls my life.

This is a shocking indictment on the NDIS, where pleas for help are met with silence—or worse, hostility and apathy. They need to be treated with empathy and respect. Minister, will you initiate a full investigation into this case, including the failings of the NDIS and its employees and legal teams?

My predecessor, Dr David Gillespie, and I have written to NDIS ministers on numerous occasions, only to be met with the same apathy that Marie and her family received. This is an urgent matter, and I ask you to have heart.