A young Hunter mother left with a spinal cord injury after surgery complications is fighting to stop almost $90,000 being stripped from her NDIS plan, after a review was triggered by nothing more than a routine request for a portable commode.
Kurri Kurri mother Maddie Roberts, 32, survived a cardiac arrest, but was left with a spinal cord injury after complications during surgery.
After a long road to recovery and learning to live with a disability, she is now fighting to stop $90,000 being cut from her NDIS support plan.
She says the move was triggered by a routine equipment request.
"No one really plans to be disabled," she said.
"I went into hospital to try and get better and then came out disabled ... I don't feel like I did anything wrong.
"So I'm stuck in this system now, and they've got to tell me what's right for me."
Maddie sustained the spinal cord injury in December 2024, after an undiagnosed heart condition led to a cardiac arrest, and spent eight months in hospital before returning home.
She is now a complete paraplegic, with damage and blood clots in multiple areas of her spine and a very minimal chance of recovery.
She cannot reposition herself, dress herself, or lift or bathe her three-year-old son without help.
She relies on overnight care equipment and attends physiotherapy twice a week to maintain her strength and prevent further complications such as scoliosis.
Support workers help with cooking, cleaning, meal preparation, getting her son ready and safely supervised, transport to physiotherapy, and manual handling tasks that Maddie physically cannot do, such as lifting her son in and out of the bath.
"They're basically my legs, essentially," Maddie said of her support workers.
Support is also needed overnight.
Once Maddie is in bed and connected to her overnight medical equipment, she said it could take her up to 20 minutes to reach her son if he woke and got up unsupervised.
"I'm the one with the disability, and they're not here to be babysitters, which is fair enough, but it's actually really unsafe for me with my son," she said.
Maddie said the National Disability Insurance Agency (NDIA) initially approved her request for a portable commode, but in reviewing that request, moved to reassess her overall funding, flagging a proposed cut of roughly $90,000 that is yet to be finalised. The funding had rolled over from her original plan and had never been overspent.
Maddie said the funds would be cut from her core supports that help with her daily life, including domestic assistance and community access.
She has commissioned an independent functional capacity assessment, at a cost of $3000 to $4000, to demonstrate her needs.
The report suggests Maddie in fact needs more support than she was originally allocated, potentially 24-hour care, and her supporters have engaged a specialist from Western Australia to help build the case for a reversal.
Maddie said the NDIA had not visited her home as part of the review, instead basing its assessment on her original hospital discharge plan and a phone call.
"They're not even here. They haven't seen you," she said. "They wouldn't even know the half of it ... you're putting your life in other people's hands and they're the ones dictating, yeah, you do need that, no you don't."
If the funding is cut, Maddie said she would probably have to give up physiotherapy, the support that keeps her strength up and helps prevent further deterioration.
She would also have to restructure her daily schedule around fewer support hours.
Her husband, Joe, took time off in the initial months after her injury to help care for her, and the family said they had since paid for home and caravan modifications out of their own pocket.
He has recently been offered additional paid work away from home, but the family say they cannot commit to it while the funding outcome remains unknown, because it would leave Maddie without adequate overnight support.
"My husband, he is happy to look after me. But he shouldn't have to. He should be working and providing for us," Maddie said.
"We're financially starting to really struggle."
The NDIA said it could not comment on Maddie's individual circumstances, but a spokesperson said in a statement that a change in the value of a participant's plan does not necessarily mean their supports had been reduced.
"Every day, the NDIS provides essential supports that help hundreds of thousands of Australians with disability pursue their goals," the spokesperson said.
"While we cannot comment on individual circumstances, a change in the value of a participant's plan does not necessarily mean their supports have been reduced.
"For example, a participant may have already purchased funded items such as a wheelchair or specialist bed, meaning those items do not need to be funded again in a subsequent plan."
The spokesperson said the agency recognised the role families played in participants' lives.
"The NDIA acknowledges the vital role families and informal carers play in the lives of NDIS participants," they said.
"NDIS supports are assessed on an individual basis, and participants whose circumstances change can ask the NDIA to review their support needs."
The agency can complete a plan variation if a minor change is required that doesn't affect a participant's support needs, or if they need short-term support.
Supporters of the family argue the funding cut reflects a wider pattern under recent NDIS changes, where the agency treats underspent funding, in this case, support hours not used while Maddie's husband was providing informal care in the immediate aftermath of her injury, as evidence that a participant needs less help, rather than recognising that arrangement was never meant to be permanent.
Maddie said she was grateful for the support she had access to, but was frustrated by the system.
"I feel bad when people put trust in the system ... no one's complaining about what they've got. Well, I certainly wasn't," she said.
"But instead of working with me and my needs, you're going to reassess and take away funding that I need.
"It's putting fear into everyone in the NDIS community, really, because we don't know if we're coming or going.
"I'm scared to talk to them half the time because I'm worried about what that will trigger."
"Everyone has a life.
"My dad had to go back to work, my sister had to go back to work, she's got kids to raise.
"Just because this happened to me doesn't stop anyone else's life, and it shouldn't stop mine either, really."
The review continues, with a final decision on Maddie's funding yet to be made.
