Hollie Hughes (NSW, Liberal Party, Shadow Assistant Minister for Mental Health and Suicide Prevention) Share this | Hansard source

We have just tabled the report on the National Disability Insurance Scheme. This is an annual review, and in my 5½ years in this place we have done this review every single year. The one recommendation of the report is that we continue to do these reports. This may be my last opportunity—or most likely is my last opportunity—to speak as the deputy chair and, potentially, as a member of the Joint Standing Committee on the National Disability Insurance Scheme. I say this with a very, very heavy heart because in no way do I feel secure that the NDIS is genuinely on a path not only of sustainability but of achieving the goals that it was meant to achieve.

I know I stated in my first speech in this place—I'm glad Senator Ciccone is here; God love him for going to get my speech when I forgot half of it. But I was up to the autism part. When someone said to me, 'Jeez, you did well without your speech,' my son and daughter—she never gives me any credit!—said, 'That's alright; she was up to the autism part, and she could do that with marbles in her mouth underwater!'

What I have always thought that the NDIS was there to achieve was to support people with a permanent and lifelong disability, and it was always important to me that it was for people with a permanent and lifelong disability. That was what the scheme was designed for, and that was how the scheme was going to be sustainable. Even in the time I've been here we have seen the number of participants in the scheme continue to grow, and I think there are a multitude of reasons for this. One is that we saw a change from the DSM-IV to the DSM-V, which changed the categorisation of a lot of conditions—conditions that would never have been considered permanent and lifelong disabilities. All of a sudden lots of conditions and diagnoses disappeared—global developmental delay, Asperger's and a glorious one called PDDNOS, pervasive developmental disorder not otherwise specified. They're all now autism.

It has also become quite chic—it's almost a bit fashionable—to have a child with autism. Honestly, the people that come up to me and tell me, with great joy, their child now has autism clearly are not experiencing the autism of my child and what I experienced as the parent of a child with severe and profound autism, global developmental delay and ADHD amongst an array of other conditions. But he achieved and was fortunate to receive best-practice intensive early intervention, and that's what the NDIS is for. We funded it before the NDIS. It was over $100,000 a year. It was very, very expensive. But I have a child now who we were told would be very low functioning. If it had been in the fifties, they'd have told me to put him in an institution and forget about him and focus on my other kids, because that's what they used to do. Instead, he got intensive early intervention—best practice. It was pre the NDIS. It was very expensive. That's why, in my divorce, I got debt. I didn't get any assets, because we got rid of them all to fund care for our son, and we'd do it all again because I now have the most extraordinary teenager who I talk to on the phone.

What worries me is that there are children who are not getting access to intensive, best-quality early intervention, because the scheme has grown out to the point where it is enormous. We have 11 per cent of all boys seven to nine years of age on the NDIS. There is no way 11 per cent of seven- to nine-year-old boys in this country have a permanent and lifelong disability. They just do not. But the political courage is lacking. I had hoped that I could work with the government to—I've offered! I'll help you politically. We've got to get these kids off. We've got to get some of these people off the scheme. There are a lot of people who come onto the scheme as adults for conditions diagnosed—and autism is a big favourite. There are people who have careers and families and have been diagnosed in their 40s, 50s and 60s and are now getting plans of $50,000 or $60,000 or $70,000. This is ridiculous. This is why the scheme is going to be unsustainable.

I fear, as I move away from this committee—and I have listened to and heard all the people across this parliament that I have sat on the joint standing committee with; they do not understand the importance of sustainability and that that means making tough decisions—the tough decisions aren't being made. The sustainability is at risk because too many people are on it. It needs to get back to being fit for purpose.

It needs to go back to being for people with permanent and lifelong disability, not for someone who stubbed their toe all of a sudden getting a $20,000 NDIS plan. It is about getting back to what it was designed for and helping our most vulnerable. I seek leave to continue my remarks later.

Leave granted.