Monique Ryan (Kooyong, Independent) Share this | Link to this | Hansard source

I rise to convey the extreme frustration of a Kooyong family with the processes of the NDIS. I have to note that I've known this family since they first presented to the Royal Children's Hospital in Melbourne. S is 15 years old. She has spinal muscular atrophy, an incurable and severe neurological condition that was diagnosed when she was only 12 months old. Despite receiving state-of-the-art therapy for her SMA, she's still dependent on assisted mobility devices and intensive supports. From 12 months of age her therapy has included the use of a standing frame. This can get her upright, weight-bearing and moving against gravity. The health implications of not standing, for her, include joint contractures, osteoporosis, pressure sores, reduced respiratory function and poor circulation.

For the first five years of her life she used a loaned frame. Her parents bought her one when she was six, and she used it for seven years. When she outgrew it, her parents donated it to another child with the same medical condition. They applied to the NDIS in November 2023 for access to another frame, one which should last her indefinitely because she's pretty much done growing. While waiting, her parents rented a frame. It cost them $7,887. It was demo stock, and they had to give it back after eight months. They have been unable to find another standing frame for her since that time.

Since November 2023 my constituent's family have had 12 points of contact with the NDIA. They have spoken to them repeatedly over the phone and by email. They've talked to them about the standing frame, about their application for a conversion of their car so that it's suitable for a wheelchair and about the rest of their child's plan. Again and again, delays in the NDIA's responses have forced changes to this child's plan, to the cost allocation and to the costs of interventions. Those delays have led to a deterioration in S's condition. They have led the family to the point where they have given up and paid for the equipment themselves. They have paid for that equipment at a cost to this family of $21,903. My constituent's family have had to self-fund her medical care because delays in the NDIS system are harming their child.

My constituents are well-educated and resourceful people. They are organised and effective advocates. For 10 years they have been battling the NDIS, and they have found its processes frustrating, cumbersome and unresponsive. My constituents have had to pay for their child's equipment because they can—at a stretch—and are sacrificing other things for their family. But most families are not in that position. So I ask the government: if this is the experience of an effective, organised, well-resourced family, what is the experience of other people with the NDIS? I hate to think how other families are managing their NDIS experience. So I place this story before the House, I place it before the minister and I place it before the NDIA. I tell them now: you have to do better.