International Day of People with Disability 2020

December 07, 2020

I'm pleased to speak to this motion, but I'm staggered that in crying about the positives of the NDIS those opposite seem to have no idea of the harm being done to too many people as they struggle with plans and plan reviews.

No-one needs the National Disability Insurance Scheme until they do, and any of us could find ourselves needing to use the system. That was the case for Tony and Kenn. They had been together for many years before applying for the NDIS. Kenn's acceptance into it came a week after his death. Tony's experience at that time has put him off applying for himself now that he has his own disabilities. This should be a system that supports people, not scares them, or frustrates them or reduces them to tears. But that's what it's doing. Here's a message I received on Friday from a woman who's been an advocate for her own child and supported other parents for years. She is formidable, but right now she's desperate. She says she feels like she's a breaking point, having had $35,000 cut from their plan—a 57 per cent cut. She really is at the end of her tether and needs to seek support.

The NDIS is doing to some people what robodebt did to many; it's pushing them to the edge. It's sending them for their own medication and mental health plans as they cope with the depression, anxiety and stress of supporting someone on the NDIS. The government cannot allow this to continue; they cannot ignore the pleas for help from so many people. It's the introduction of independent assessments, which are seen as a way of reducing costs, making it harder to claim and taking away supports people are currently receiving. There were stories like those in The Saturday Paper last weekend which point to an agenda by this government to reduce the control people have over their own lives. That's the opposite of the aims of the NDIS.

To get a snapshot of the current situation in the Blue Mountains and the Hawkesbury in my electorate of Macquarie, I collected case studies—dozens of them, in fact, in recent weeks. I asked people about the good, the bad and the ugly. Some have shared the positives of the fact that when they do have funds for therapies how those can help with mobility, emotional health, occupational therapy and exercise. Nathaniel, from Winmalee, said, 'It's been a lifeline,' while he tries to fix his life. But there are way too many failures. One person pointed to going to numerous appointments with her sister, saying the same things over and over again and being stressed because the system is so hard to understand. She said, 'My sister cannot navigate it at all'. There was a woman who manages 30 clients with primary autism. She said that she faces with them review meetings with arrogant staff and that she spends unpaid hours counselling clients and parents because they didn't get the things that they needed.

Another care worker has raised real concerns about being on the inside and seeing how clients are charged very high rates. Participants and carers talk about the high cost of reports—not just in the cost of money but the cost of time and the cost of stress. The plan review process is the source of much pain: 'Gruelling,' Lauren describes it as. There's a lack of transparency around plan reviews and people have to spend hours emailing, phoning and attending appointments in the two months leading up to reviews, only to find that reports are ignored by planners. One person described planners who have no genuine understanding of disability and little sympathy for what often feels like a desperate situation.

These are the sorts of comments that people have given me. These are NDIS participants, parents and family members, or, sometimes, partners, and they cope with a lot. I asked parents what their worst day looks like, and these were some of the things they told me: aggressive outbursts and their other children being exposed to violence; meltdowns from the moment their child wakes up to when he goes to sleep—'meltdown' was probably the most commonly used word in the case studies I was given; and waking exhausted, having been woken four times each night by their eight year old high-needs son, who is constantly with them until he finally falls asleep at 10:30 pm and they go to bed anxious and worried about how to help them. This is even when plans are good. Claire, who has a son with autism and ADHD, says on her worst day she wants to curl up and cry. In fact, lots of mums admit to crying at the end of the day, or during the day, for feeling like a failure. They talk about anxiety, stress, doubt and shame for not being able to provide the help their child needs. When someone says to me, 'This is all too much; I'm a resilient person but even I'm getting broken,' I know something is wrong. A system that is breaking people is a system that is broken. It can be fixed, but it is a test of whether those opposite really believe in the NDIS