Thriving Kids: A New Support Concept.

Emma Myers 0:00

Minister for the NDIS, Mark Butler has announced a new program called thriving kids, an alternative support system to the NDIS for children with developmental delay and autism aged between zero and nine. Lee Smith is the mother of an autistic child. She's responded to the Minister's comments saying she's shocked at the unexpected announcement.

Lee Smith 0:32

I was stunned and then thinking, why am I surprised? This is the way they've been cutting plans and treating people with disability for a long time. Still, every time that one of these big announcements happens, it still kicks you in the guts, your rational brains telling you this can't be happening, then they go ahead and make decisions without consulting people with disability, just ignoring the evidence, just to save money, which they will end up having to spend more in the long term by not supporting these kids. 

Emma Myers 1:05

What are your top priorities in taking care of your son? And how will this new announcement impact that?

Lee Smith 1:14

The top priority right now is getting him to school, because academically, he is thriving in a mainstream school, but socially and emotionally he's struggling, and the school finds it hard to understand that he can be high achieving in some areas and need a lot of support in others, and he's not toilet trained, and he's 10 years old, so developmentally, The age most kids achieve that goal is like three and a half years old, and without NDIS support, it's likely that he'll drop out of mainstream school, and I see one of two things happening, either he goes to a special school and then his academics suffer, because they'll be focusing on His social and emotional well being, but not be able to provide the academic support that he deserves, or I home school him, which means I have to stop working, and the trajectory for his life will be impacted. My son has the ability to graduate from school, to get employment and everything, but only if he has the supports to do it.

Emma Myers 2:24

What do you think about this new program and the fact that they have a roll out deadline of the first of July next year, considering we're still waiting for foundational supports?

Lee Smith 2:39

It's exactly like the NDIS pilot. They're flying the plane before it's finished being built, announcing the name of the program. Thriving kids before they even know what it's going to be. It's all just an effort for them to save money in the short term, but they don't care about the human cost of that.

Emma Myers 2:58

How do you think that the surviving kids support system will be different to what you're getting now?

Lee Smith 3:05

I guess in one sense, it's hard to say, because they haven't provided enough detail about the program to be able to make an armed decision about it. But from what I do, know, it's not going to be the same quality and level of support that he currently receives. They're talking about programs like Inklings and parent sessions. So basically saying that, you know, I'll do 10 parent sessions and my son's autism will be cured. That is so incredibly insulting to my child, to me, basically saying if I was a better parent, he wouldn't be disabled. We had a team meeting yesterday, and you know, we were reflecting on all the successes he's made with NDIS therapy, and then the challenges that he's still got to overcome. And then an announcement like this just makes me think that all the progress he's made is going to be lost, and that, you know, he's not going to continue to make progress and be able to go to a mainstream school, graduate, get a job. You know, that's all I want.

Emma Myers 4:09

How would you define my odd to moderate autism?

Lee Smith 4:14

It's really insulting to use those terms because they're not even diagnostically valid. He has some areas that he doesn't need a lot of supports in, and others that he needs a lot. The NDIS is supposed to be about assessing each child and person individually as to what they need functionally to live a good life. It's not supposed to be based on your diagnosis. The fact that he's saying that autism is lifelong. Neurodiversion can't be outgrown with short term therapy or parent sessions. The implication that autistic children are less than other children is just shocking, and when he said, in his opinion, the children with mild and moderate autism shouldn't be on the scale. What gives him the right to make that decision? What qualifications does he have? So you have a PhD in neurodevelopmental disabilities, they're making all of these announcements and changes without proper consultation with the Autistic community. They're saying they will do that, but they absolutely are. Where's the accountability?

Emma Myers  5:21

If you could say anything to Mark Butler, what would you say? 

Lee Smith 5:25

I think people should know there's a disability tax. It shouldn't be that children with certain diagnoses get NDIS funding, which is fully subsidized, and other children have to go through other programs, and the parents have to pay as a family, we are worse off having a child with a disability in terms of our income, because I have to spend so much time not working and looking after him, so I can't afford to pay gap payments. That means he loses out. So that means he doesn't reach his full potential. Mark. Butler is not looking at the impact it's going to have on real human beings. You know it's going to lead to parents having to relinquish their children because they can't look after them anymore. It's going to lead to parents attempting suicide because their mental health suffers and they can't look after their kids without support. I want him to come and spend a day with me and my child and see what it's like and see how the supports help him. Like for example, recently, we had a goal to be able to make friendships after school, and because he's autistic, he was having trouble with that, so the key worker went to to facilitate him to have the skills to be able to do that, and they've achieved that goal in two sessions, because it's in his natural environment, because the key worker knows my son well and has a good relationship with him, because she's a skilled therapist. All of these things that the NDIS helps with, if they're removed, I have no idea how we're going to cope.