Hollie Hughes (NSW, Liberal Party, Shadow Assistant Minister for Climate Change and Energy) Share this | Hansard source

On behalf of the Joint Standing Committee on the National Disability Insurance Scheme, I present the final report of the committee on the capability and culture of the NDIA together with accompanying documents and I move:

That the Senate take note of the report.

The NDIS joint standing committee is one that usually, as we work though issues, approaches our inquiries and what we're looking into in a reasonably bipartisan say—something that we always endeavour to do because we know that this is not only the largest part of the budgetary spend in the social services space and a program that is growing but also one that affects some very vulnerable people in our society. So it is important that we do try to work together as much as we possibly can.

So, whilst there were 27 recommendations through the final report, there were a couple of them that I really was concerned about and felt fell well short, especially when the actual report was about the culture and the capability of the NDIS. Now, one of the issues that we were looking at was the financial sustainability, because, without financial sustainability, there is no scheme. We think it's important that, if you're saying you're going to improve the culture and you're going to improve the capabilities of an organisation, you want to make sure that there's some funding there for that to happen. And so we did feel that we needed to bring to the attention of those that might be interested in the report that this was not supported by all members of the committee. It was supported by the coalition and it was supported by the Greens that the financial sustainability reporting be part of the report, but it was not supported by members of the government that that should be something that we looked to. That is why—and I'm sure my colleague Senator Reynolds will speak to this more so when she makes her contribution. We know that it is disappointing for people that are participants in the scheme and their families. Because it is demand driven, there are only two ways that the government, as they've claimed, can start to bring inflation costs—the costs of the scheme growing—down so it will not grow by as much as it currently is. That is either by cutting the number of participants or cutting the value of their plans. Those are the only ways you do it. There's no other way.

Because we cannot get the financial transparency that we need to be able to see where the scheme's heading, we don't know. Participants and their families don't know what conditions are going to be cut, what disabilities are going to be deemed not worthy of being assisted by the NDIS, how participants are going to get funded or how much they will get funded for. Will everyone just get a carte blanche cut, or will some more thoughtfulness go into it? We don't know, because no-one will present those figures.

We held a very late hearing into a sexuality, sexual development and sexual expression part of the NDIS. Again, it had to be manoeuvred through, I would suggest, Senator Steele-John. We worked together to make sure that we had that part of it. I know everyone hears the word 'sex'—and we get a lot of headlines about how the NDIS is going broke because of sex workers. That's not what this was about. It is really important that this doesn't overshadow this report.

One of the things that we learnt might actually shock people. All students receive sex education at some point in their schooling. In different years they receive information about sexuality but also about their body and puberty, who can touch them and who can touch them where, who they can touch and who they can touch where, and what's appropriate, what the societal norms are and what the expectations are. We learnt that a lot of children with disability are actually removed from those classes, so they are never taught any of these things that every other child is taught. I acknowledge that kids with an intellectual or cognitive disability quite often need to be taught things in a very different way because they have a very literal mind or they have a different way of understanding things.

We know that there are a lot of young adults that enter the juvenile justice system and the justice system because they don't understand the behaviours that are appropriate, they don't understand what is acceptable and what society accepts as normal behaviour, and so they find themselves getting into trouble. And they get themselves into trouble not only as a perpetrator but also as a victim, because a lot of people with a disability, especially, again, those with cognitive and intellectual disabilities, are never taught about public versus private—what sort of behaviour is acceptable in public and what sort of behaviour is acceptable in private. But they're also not taught how to have autonomy over their own body. They don't understand what's appropriate behaviour and what's not. So, many of these people become victims of inappropriate sexual behaviour and have no framework in which to understand that.

Puberty is another one, for all of us that are parents of teenagers. As of Sunday week, I will have three teenagers in my house; lucky me! Puberty for any kid is a pretty tricky time, but you throw in a disability and it can be a whole new level of complexity. I am going to tell this story. If you're an autism parent, we teach our kids to do things and then they start to generalise it. So, if you teach kids to wash their hands in the bathroom, they then generalise that to other bathrooms. They learn to do that in their bathroom at home, but they know that they can wash their hands in the bathroom at school or in a public restroom.

So, with a teenage boy in the house, when you get to the quite sticky situation of masturbation, let me tell you, there are certain things we need to teach them. One of things that we teach children with autism, and children with intellectual and cognitive disabilities, is that those sorts of behaviours happen in the bedroom. You might wonder: why not the bathroom, or anywhere else, for that matter? It's because we do not want those children to generalise that that activity can occur in any bathroom. But sometimes children are not taught these things, and you can imagine how much trouble someone can get into who's 15 or 16 and generalises that activity to a bathroom at a train station perhaps on the way to school or on the way back. They're going to end up in a bit of a difficult situation.

So one of the recommendations that we have made is that, when a teenager with a disability is doing their NDIS planning, there is some recognition of this, particularly during those years of puberty and sexual development, and that those children are given a framework—that there is an understanding that there will be a need for this, as unpleasant as people might find talking about it, and people might prefer not to think about it. As I said, as the mother of three teenagers, I'm kind of there with you! But I have to face facts because one of mine has autism, and you have to make sure that your child has the best possible opportunity to live a full life. That means that they participate fully but that they participate within societal norms and that they are acting in a societally acceptable way. So we have recommended that, particularly during puberty, there is a sexuality framework and that there is an understanding that there may need to be an increase to the plan. Usually this would be through behavioural supports. It might be through the use of a communication tool to help give a cognitive understanding of what this is all about.

I don't want this to overshadow it. The recommendation from the inquiry we held into this issue was unbelievable. Anyone who wants to read it should go and read it. I'm not going to read it out to you, because it makes no sense at all. The government was clearly so uncomfortable, out of touch and unwilling to address this issue, which can be uncomfortable. It can be awkward. They were so unwilling even to acknowledge the challenges faced by these adolescents, particularly those with intellectual and cognitive disabilities, and the support that they and their families might need for what is a tricky enough time to navigate for any teenager, without the disability, but without any additional support. All that the government has supported through the main part of the report is recommendations from the disability royal commission which allude to this, talk about this and recognise that but provide absolutely no guidance of the agency at all. That is exactly our job to do, to decipher and pull these things apart to make sure that these sorts of services, behaviour programs and understanding are there.

I will mention the information, linkages and capacity-building, ILC, programs, which are the third plank of the NDIS and which are there to allow community participation. Again, they sort of feeds into it. There are community groups and organisations that well suited to allowing people with disability to participate in certain activities without requiring additional support out of a participant's plan for one-on-one individualised supports. The ILC program and its grant process was moved into the Department of Social Services, outside of the agency. Coalition members have made a recommendation that it come back into the agency so that synergy between what the agency is doing and what those programs are setting out to achieve is something that is aimed for and working cohesively. Why that was controversial I have no idea, which is why the coalition felt the need, as did Senator Steele-John, to put that in as part of the report.