Meryl Swanson (Paterson, Australian Labor Party) Share this | Hansard source

I welcome the opportunity to speak on the NDIS today, and I thank the member for Hughes for shining a light on the NDIS in this chamber, but I note the hypocrisy in a member of the Liberal-National coalition spruiking this scheme. I also want to pay tribute to my colleagues the member for Macarthur, who has just spoken on the NDIS, and the member for Oxley, who will be contributing on this private member's bill today.

The NDIS provides packages of support to profoundly and severely impaired Australians, and it helps them to have some control over their lives, which was what this scheme was always about. It was an insurance scheme, insuring all of us, in fact, who might face some kind of disability. That was the key: to have choice and control—they were the two words coming from our peak bodies for the disability groups around Australia.

For this to be achieved, the scheme needs to be funded appropriately. Last year, the Morrison government 'underspent'—it used that word—$4.6 billion on the NDIS, calling it an underspend by participants. I know that, in my electorate of Paterson alone, people have been crying out to have their plans adequately funded. They are certainly not saying that they can't spend the money and it is an outrageous claim to say that they are, especially for people who are desperate for packages and for their existing packages to be adequately funded.

Chris Walker is an extraordinary human being. He is a grandfather from Raymond Terrace who is a tireless advocate for his two grandsons, Jordan and Logan Weir. These little boys have an extraordinarily complex and rare disease—in fact, they have an incredibly rare genetic condition—and, until October last year, under the scheme Jordan received $100,000 a year more than his brother, who has the identical condition. How is this possible? It took years and countless appeals for Logan to receive the same funding as his brother, though they have that same rare genetic condition. Indeed, the condition is so acute that they both require parenteral feeding. They don't have intestines. Their little bodies are just so incredibly complex. If it weren't for the love of their grandfather in particular and their broader family, their lives would be just indescribably difficult. In fact, they are now. My office has worked with Chris throughout this incredibly long and difficult journey to see justice for these really brave and inspirational little men. They're phenomenal. But it has been so frustrating, and at times the injustice has been palpable. Chris tells me it was almost a full-time job, as you can imagine—he's been constantly grinding away, working to advocate for his grandsons. Chris says:

The boys both have the same condition – it's a rare disease and that adds to the problem because the planners don't understand the rare diseases.

He's not the only one who's been working full time on this. I met Rachel Threadgate, from Abermain, a great little town, at an NDIS roundtable that I hosted with the shadow minister for regional services, Jason Clare, last year. Rachel's daughter, Ela, has been diagnosed with several disorders including autism spectrum disorder, hypermobility, anxiety and speech and language delay. Ela's NDIS plan has been reviewed several times and the results have been constantly disappointing. Rachel has followed the appropriate channels to have these reviews changed but has described the process as lengthy and ridiculous considering the review took as long as the new NDIS plan. In a recent email, Rachel wrote:

I feel like we have jumped through every hoop they have asked us to, but it seems like we are getting nowhere. We even got a functional assessment done but it seems that it has made no difference to her funding … We have had to cut her psychologist visits and speech therapy and currently she is only doing occupational therapy, but not as often as we used to. We were informed by our LAC that we got a tough assessor and we just had to take what we were given.

Bill Shorten also came and did a fantastic roundtable and forum with me, and we heard countless examples of this. But it gets down to the bottom line: the government needs to put their money where their mouth is and fund this scheme properly. (Time expired)

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