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Episode 64 – The NDIS Cuts and the Urgent Need for Immediate Action

S2 - EPISODE 64

The NDIS Cuts and the Urgent Need for Immediate Action with Nicole Rogerson of Autism Awareness Australia

What happens when the supports our kids rely on are stripped away, and the ‘solutions’ we’re promised don’t actually exist? That’s the reality many families are facing right now as thousands of autistic children are being removed from the NDIS.

In this powerful episode, Jane McFadden sits down with Nicole Rogerson, CEO of Autism Awareness Australia, advocate, and autism mum, to unpack what these NDIS cuts really mean for families — and why urgent collective action is needed.

Key Takeaways from Today’s Episode:

What we cover in this episode:

  • Why over 600 autistic children are losing NDIS packages every week

  • The gap between glossy policies like the National Autism Strategy and the reality of no foundational supports

  • The devastating pressure this places on families, schools, and already burnt-out teachers

  • How stigma grows when kids aren’t supported in classrooms — and why that matters for every child

  • What parents can actually do right now: contacting local members, documenting their stories, and pushing back as a community

This episode is for you if:

  • You’re worried about losing your child’s NDIS plan or already have

  • You feel overwhelmed by what losing support means for your family

  • You’re tired of being told ‘there’s help’ when you know there’s nothing in place
  • You want practical ways to advocate and protect your child’s future

Transcript:

Jane McFadden:

Hello and welcome to the next episode of ADHD Mums. Today we have Nicole Rogerson on today. How are you, Nicole?

Nicole Rogerson:

Good, thank you very much for having me.

Jane McFadden:

Oh, it is very exciting because I released my NDIS Cuts episode, which I’ll put in the show notes, and as I released that, it was one of the most nerve-wracking ones I’d had because it was quite polarising and quite forward with my views. And it was so relieving when you came out briefly afterwards with like exactly the same thought patterns around the NDIS or very similar.

And it was amazing for me to have that backing because I was concerned that I was the only one kind of thinking those thoughts.

Nicole Rogerson:

No, and it was funny when I got sent the podcast and I listened to it. At first I thought, well, I’m not sure why I’m listening to this, but I turned it on in the office and I couldn’t turn it off. I mean, it was a little bit like listening to me, except it was you.

There was a lot of, you know, distance between us in terms of what we were saying. And in actual fact, Jane, it’s not only, I’m glad that it gave some validation to what you were thinking.

What displeases me a little bit is that I feel like what we’re talking about is really obvious as plain as day, but sometimes when I turn around and look at others in the autism sector, you know, nobody is necessarily calling this out. And that disappoints me a little bit, that it just, you know, there’s a handful of us that are saying, are you kidding me? Can you see what’s happening?

But some organizations remain, you know, a little bit too nervous of their own shadow to feel free to come out and talk about this. And I think it’s critical that we talk about it now because it’s happening.

Jane McFadden:

Oh, I thought it was great because I had the same thought pattern because I kept clicking on a lot of people that I follow on social media within the industry. And I was like, hang on a second.

And I always have that thing because being autistic, I suppose I’ve had that feeling of being wrong or not right or not fitting in. And I’m like, why is nobody saying what seemed obvious, but then seemed like I was the only one thinking it. So to have validation or have a similar thought pattern from you was great.

If anyone doesn’t know who Nicole is, sorry, I should jump to who Nicole is. Nicole established Autism Awareness Australia, who I’ve been following for a long time. She established it in 2007.

And she’s been within this industry, within this area for obviously a very, very long time. Nicole’s also presented at the United Nations, where Autism Awareness Australia has been introduced as a member organisation. Nicole’s been on 60 Minutes, The 7.30 Report, Today, A Current Affair, Australian Story, and in the Australian Women’s Weekly.

She’s also got a couple of articles come out today, which I’ve seen posted into our ADHD Mums Facebook group. Nicole is really experienced and very passionate advocate for autism, which I think is amazing. Have I missed anything critical, Nicole?

Nicole Rogerson:

No, probably the biggest qualifier is I’m an autism mum. My son Jack is why I’m in this space. And he is just a couple of weeks short of 29. So yeah, I’ve been doing this for a very long time.

And my advocacy is very much on behalf of autism families, because, you know, that is who I’ve spent most of my professional life working with and for. So I guess that’s the focus of what I bring to when I look at these particular issues.

Jane McFadden:

Okay, awesome. So let’s jump to it. Because Nicole has already spoken on a number of issues, which I’ve been sharing in the Facebook group, and you can look Nicole up. I’m happy to put links into Nicole at Autism Awareness Australia, plus links to things that she has already covered in this area if you’re looking for a bit more of a basic overview.

I’m going to go a bit more in depth because just for my own love and interest, which seems to be representative of everybody else’s, I’ve seen you already cover the National Autism Strategy and how it’s been brought out at the same time that a lot of autistic children have been removed or are in the process of being removed off the NDIS.

And I’m going to put links into that. And we’ve also seen you speak on the 600 autistic children who are losing NDIS packages every week. What I think would be really great to talk about is what are we supposed to do as families of these children? Where are we supposed to turn when we do lose the support? Because we’re being pushed back to Medicare, but I haven’t seen the wait list and the cost is just huge.

Nicole Rogerson:

Yeah. And I don’t, it’s a really good question. And what can you do is a really good answer. And while I have talked about it before, I guess I should just clarify that what you did beautifully in your podcast was you started by saying there’s a National Autism Strategy and technically the podcast should have been an analysis of that, but it begged belief that anybody couldn’t see two things happening at the one time.

I like to say it’s a little bit like a house being renovated and, you know, the upstairs bathroom was great and ready to show, but that’s all a bit pointless if the whole rest of the house isn’t being done. So at the time, calling that out was both difficult publicly because there was a lot of people that spent a lot of time developing that National Autism Strategy.

And for a lot of us in the community, we’ve wanted a strategy for a very long time. So it feels like you’re the mean girl when it’s released, to be the one that says it’s not that great. But it’s also too important for us to get wrong. And we know what all the unintended consequences of that.

So maybe I might’ve spent the last couple of weeks talking about the National Autism Strategy. I don’t think I would have changed my view on it, but what made it sort of like a five alarm fire for me was you can’t over here put a glossy cover on something and say, look at this amazing strategy, it’s going to be the path forward, and have people believe that, when over here you’re taking away the supports right now that these children need.

And I don’t like, your listeners may or may not be interested in politics, but I promise you this is all about politics. And it’s looking at the way the government and the opposition, the way politicians talk about the NDIS and where it’s going. You have to think about where it’s going in order to be able to see what these changes that are happening now mean, to see what direction we’re slowly being pushed into.

And whilst I’ll be honest, I don’t know. I don’t have any insights into exactly what the government are planning here, but my 20 plus years in the sector mean that I’ve got a pretty good inkling what it looks like. And what we know, and that’s all we can deal with at the moment, is that roughly 1,000 to 1,200 families are asked to be reassessing their children for their eligibility for the NDIS.

And we know approximately half of those are coming out of the NDIS. They’re losing their eligibility. Now, a minor change happened at the end of last week, where the NDIS were giving families 28 days to come up with some evidence to prove eligibility.

That change has gone to 90 days. I would cynically argue that that is not giving you more time. It’s just not rushing you to the inevitable. I don’t think the outcome’s going to change. I think you’re still going to potentially, for a lot of kids, lose their funding. You’re just going to be anxious for longer.

You would have been anxious for 28 days. Or as one of my members of staff said, great, now I’ve got 90 days to feel panicked about my plan. So I don’t think the outcome is necessarily going to change in the short term.

I think the idea of cutting the amount of children in the scheme is by design. I think the idea is, for a very long time, Bill Shorten as the former minister would say, the NDIS can’t be the only lifeboat in the ocean. I’m happy to go with that and say that the states should step up and there should be different systems in place, and maybe the NDIS isn’t, you know, the be all and end all for everybody.

The problem is when nothing else exists, we need the only lifeboat. You can say it shouldn’t be, and I don’t disagree, but the problem is until you make other boats or islands or moats or whatever it is that these children apparently need, then you’re just simply taking supports away from people that will have very real and immediate impact.

Jane McFadden:

I agree. And I think there’s that, it’s like pretending that the National Autism Strategy is a boat. It’s not a life raft. It’s like a port that you can’t get to because you don’t have a boat.

So it’s like, you could go there, but there’s no life raft because nothing exists. I don’t know why they did it that way.

Nicole Rogerson:

I would argue it’s a distraction. And I would also say it’s already probably sitting on a shelf and somebody will dust it every now and again. That sounds controversial to say, and I don’t want to sound like a complainer, even though I just sounded like a complainer, but it’s really frustrating.

And maybe this is just me being old, but I’ve watched government after government. And honestly, it doesn’t matter what color they are. They’ve been mismanaging autism for decades. It’s just, what’s disappointing is after 10 years of the NDIS. Okay, it’s not perfect, but you wouldn’t expect it to be perfect after 10 years.

We had to sit down and have a really honest chat. This is what I would have liked to have happened — to have a really honest chat about who’s in the NDIS and who’s out. And if you are out, if you have the type of autism that isn’t going to require eligibility, that’s okay. There’s no need to be scared about that.

We need to then say, okay, for those children who present with that type of autism, if there is something better for them, what is it? You have to tell us what it is first. You can’t just say, oh, it looks like the NDIS isn’t what you needed, you needed this great thing over here called foundational supports.

But the great thing over here called foundational supports hasn’t been built yet. So you can’t say it’s great and ready for a particular type of child with autism when it doesn’t exist.

And I think one of the most telling signs of this is when I saw this particular move coming, you know, a year ago, but in the last, certainly in the last six months, I have traveled around Australia and I’ve met with every state education minister.

And I’ve met with them ostensibly to say, do you know what’s happening? And do you have any idea how this is going to result in these unintended consequences? And most of them by and large have admitted they’re not ready. Foundational supports do not exist. They are not in place.

So I can’t tell people listening to this podcast, you should be demanding your foundational supports. You should be enrolling your child into this program over here, because it literally doesn’t exist.

Jane McFadden:

Oh, completely. And I think, you know, autistic people ask generally quite straight thinking, straight talking. I find this very confusing when it’s like go over here, but nothing exists.

This pretending that it’s being done for our benefit. Like, I’m like, just, just tell me that you’re going to take as many kids off as you can. And that I need to start saving money because I’m going to have to pay this out of pocket.

I need to get on some wait lists. Like, don’t pretend that you’re doing it to help me and help my kids. That’s what gets to me. It’s just so, it’s such bullshit, to be honest.

Nicole Rogerson:

Well, again, that’s where it comes back to, it’s kind of politics, right? Yeah. It is like, I agree with you. I keep saying to people, I want you to understand this change, this NDIS reform has nothing to do with clinical outcomes.

We are not talking about sitting down and looking at what supports are appropriate that children or people with autism need and devising a system. This is merely just rearranging the deck chairs on the Titanic. So a budget in one area doesn’t look as bad and we’ve moved funding over to another area.

The problem with that level of cynicism, and I am cynical and old, I want your listeners to all know, look, this is just me being an old crutch lady, but it’s tiresome because it’s, let’s just have the conversation. If the NDIS has a lot more kids with autism than you expected, okay, I’ll grant you that’s true.

I would also say it’s just because you had a terrible view of how many Australian children actually had autism because we weren’t supporting them before the NDIS, so they had no clue. But then there’s another side to it — if the NDIS was a place that accepted children with developmental delays, whether they would meet the criteria for autism or not, clearly those children needed support. They needed something.

So I don’t mind, I’m open to the fact that the NDIS might not be the home of where those supports are ultimately delivered, but they’re where they’re delivered right now. And if we can’t come up with something better and design something better, you simply cannot bring those children out of that scheme and take away the supports if there’s nothing for them to go to.

Because right now, when you asked me the question, what can families do? This is really tricky because outside of ringing your local member and making them aware of the fact — because you’ve got to remember the problem politically is that both the current government and the opposition have this problem to solve. So it kind of doesn’t matter who wins the next election. They’re unlikely to want to change this reform.

But letting your member know that you are a local family and that you had supports for your child and those supports are now gone and they’re not ready. Sometimes this will be the first time your local member will know about it. They’re just not a cloud brief enough.

So it was kind of interesting to put your head up nationally for me in the media to say, by the way, can you all see what’s going on here? It’s disappointing how few people could see and could put the puzzle pieces together to work out what’s going on.

Jane McFadden:

Oh, I completely agree. And then it does feel a little bit like you’re chipping what someone is doing to help, which felt very negative. I totally agree.

If we go back to the schools, because we talk a lot about the schools on this podcast, my view is that the teachers and the schools are doing the absolute best that they can possibly do. I don’t think there are many or any bad teachers, if I could air quote label that, but I do find them to be completely stressed out, overwhelmed, underfunded, which has just got an effect on everybody.

I am concerned about the amount of pressure that will be put back on the schools and the teachers, particularly in primary school. How do you think that is going to play out for our kids that are struggling already?

Nicole Rogerson:

Yeah, Jane, you and I are on exactly the same page because this is exactly what I’ve been talking to education departments about and education ministers across the country, who I’ve been really happy to say are giving me their time because they’re quite aware of what’s not going well.

I would say schools would be the number one reason that families contact us here at Autism Australia. It’s just a massive pressure point for so many families. And I agree with you, I don’t think teachers wake up in the morning to go to school to think, how can I be mean to autistic children?

But the system itself is not set up to adequately support a lot of our kids. Now, this is not every school and it’s not every teacher, but what we do know is that a big problem we have in Australia is teacher retention rates. We’re having a really hard time bringing people into education as a career and we’re having a really hard time keeping them. Some states are worse than others.

Then if we throw in a school system that is not resourced adequately, then we throw in there an inclusive policy that says all children with autism or ADHD have the right to an appropriate education at their local school, which we all can agree on is absolutely appropriate. But we don’t resource it properly. We don’t support the teachers well enough. We don’t have experts in the school that are able to cope with that.

And now let’s throw the cherry on top and take whatever support that child was getting in the NDIS. Let’s take that away. So all of a sudden we have what might’ve been working outside the school to support that child to be in school. It’s kind of a little bit like Jenga, right? We just keep taking the blocks away. We keep making it harder and then it all doesn’t work.

And then we have suspension levels high, expulsion levels high. That whole process of making a child feel unsuccessful and unsupported in the school has a terrible impact on their mental health, has a terrible on-flow effect to the families and siblings, not to mention — what terrible message does that send to the other 29 children in the class, which is sometimes children are just too much, just too much. We can’t really cope with you. You’re a little bit too much.

And that has a societal impact that is so wrong. So I know I’m going very macro 360 view here, but these little tiny changes and these little areas where we’re getting it wrong actually end up rolling into having a lot less accessible Australian community if we don’t get those fundamental things right. And we need to do that when people are very little, when kids are young.

Jane McFadden:

Oh, I think you and I, I just wrote down on my paper here, stigma, because I had the same thought pattern. I did an episode recently about disclosing a diagnosis to your child.

So I was saying you don’t just get your child diagnosed. You actually have to have the conversation. Here are some steps as to how you talk about it positively, what you would say, et cetera, because people don’t know what to do.

And we love our kids, we don’t, then we avoid it. So anyway, in that conversation, I was talking about how children don’t have that stigma yet. And it’s such a beautiful way to talk to them.

However, recently I’ve had a few people listen to the episode, write me an email and say, my child who is a bit more internalising, they get quite sensitive, quite nervous, quite shy. They have a view that autistic kids are the naughty ones, air quoting, the bad kids, because that’s what they see at school.

And that’s the stigma now is I’m not like that. That’s that bad kid no one likes. And I was like, well, if the children were more supported at school, they wouldn’t necessarily have those behaviours that give them that label, but yet we’re going to be taking away more support. So what would that do to the stigma?

Nicole Rogerson:

Yeah, look, I agree. And herein lies probably some of the problem is that the autism spectrum has become so broad in the last 20 years. We’re using one word to describe a lot of different types of presentations, which I know why it was done.

In hindsight, I don’t think it was a good idea. I think it would have been more helpful if we had have kept certain diagnoses like Asperger’s syndrome and profound autism to at least describe why these two things are different. But it fundamentally doesn’t change the rule of thumb, which is if a child’s at school and they’re not being supported, they’re going to struggle.

Now that could be behavioural, which is usually the most obvious way to see externally. It could be sensory. It could be a child who’s actually quite well behaved at school, but they go home and all the wheels fall off.

There’s all of these different presentations and we need to be that sophisticated when we’re dealing and managing with autistic students. We need to say they’re not all the same. There’s no one size fits all autism. There’s no one treatment methodology.

So that makes it very difficult for a teacher in a school setting with 30 children to be able to have the resources and the time and the bandwidth to say, what does this child in front of me need? Because fundamentally we should never ever think of children with autism as a job lot. This is what kids with autism need.

Because in my 20 something years experience here, no two children with autism are the same. They all will need variations of support, but you need to give the school and the teachers the resources to be able to do that with the parents, analyse what the child needs. There might be 10 children with autism in that school, but there might need to be 10 completely different individual plans of how that child’s going to do best and be best supported and included in that school.

And don’t get me wrong, Jane, some schools do this really, really well. And those are the ones that should be supported because then no child looks like the wheels have fallen off. And then that takes away the stigma that you referred to because actually everyone here just has good days and bad days.

And then that stigma isn’t there. So, you know, it’s a really complex issue. And I’m not pretending that, you know, there’s a lot of people that talk and yell about inclusive schools and why they’re really important.

And I’m one of those people who thinks they are really important. But just by saying the words, we’re an inclusive school and we believe in inclusion and we want that, doesn’t make it happen. You have to do the hard work. Show me your work. It’s a bit like, I don’t care how you got the answer in math, show me how you got there.

I feel the same way about inclusive schools. Like don’t just put it as a logo somewhere. Don’t have the principal just tell new parents, oh yes, we’re very inclusive. Show me what good looks like before you know a child’s going to be successful there.

Jane McFadden:

Oh, I love that. I think there’s so many parents on here that would be going, yeah, I enrolled my child into an inclusive school. It wasn’t at all.

You know, it’s like, I’ve got the word. It’s like when the principal meets you and they’ve got their arms crossed and they’re kind of like, oh, of course we accept children with autism and difference. And then, and then they’ll throw those little telltale fines, which have you really looked at all your schooling options? Like, are you sure we’re right for you?

That is like a red flag that says, uh, they don’t think it’s right for them.

Nicole Rogerson:

And I know this is really difficult because some parents are really, I get this over the years, like some autism mums go, I’m cranky. My child has a right to be at that school and I’m going to fight you all the way.

Whereas I take a slightly different approach as I get older. I kind of say it’s a little bit like being on an aircraft, like apply your own oxygen mask first and apply your child’s. Sort your family out first, go somewhere that wants your child, that wants to work with you, that wants to make this a success.

And then by all means, once your child’s happy and they’re doing really well and they’re thriving, come on over, give me a call at Autism Australia, and you can come and advocate with us and speak on behalf of families and show what good looks like.

Because sometimes we fall into that habit of complaining when the wheels are falling off. But I also think it’s really on us to show schools and education departments how to step up, how to build capacity, ironically, in teachers. Let’s help teachers and school staff and admin people and the canteen person.

And how do we build capacity in that community to be more accepting, but not just accepting, cause that’s kind of a bit bullshitty, to be honest, like accepting, but an active member in helping a school become more inclusive.

Jane McFadden:

Oh, I love that. Yeah. You could expel a lot of energy being negative. I certainly had, I, the first school I picked was an inclusive school. I air an awful experience there.

I decided after only about a month, I thought this is actually going completely nowhere. These people are not, we are, this is never going to happen. And we chose to leave and then push that energy back into the podcast.

I thought this is going to drive me mad.

Nicole Rogerson:

I agree with you. If you’re fighting what feels like a losing battle, it might be better off moving depending on the circumstances. And look, it’s easier said than done because depending on where you live, obviously families listening to this in rural and regional Australia say, yeah, sure, Nicole, nice work. Like that’s not always possible, but if it is possible, it’s worthy of being open to.

And is it right? No. It doesn’t give the school a permission to sleep. No, it doesn’t really. Because in the end, most states, particularly New South Wales and Queensland recently had audit reports into the education departments.

And, you know, their data is shameful, absolutely shameful on expelling and suspending students with autism. And then that, you know, it doesn’t look good for them either. So I would say one thing to families — and I can see, I don’t even know what a jot form is, but after I’ve listened to your podcast, I now know I need to know what a jot form is.

But what I love about it, Jane, is oftentimes, again, coming back to the politics of it, but if we’re going to change policy, we have to play politics, right? And sometimes I can get the national media’s attention, but I need families who are willing to come out and speak and give their story and give their experience. And sometimes that’s hard for us to find.

So it’s really handy to have parents. And I love how many of them are obviously happy to be part of your community and come and tell you and share their stories because it’s only until we show the absurdity of some of these public policy changes, does the rest of the Australian community pipe up and think, well, that’s a bit silly.

And I think we have to understand that in the autism, ADHD, in the disability world, we’re thinking about this stuff all the time. This is front and center for our communities and has a really big impact on our lives. So we can’t compartmentalize it. It affects our everyday life.

But everyday Australians aren’t thinking like this. They’re honestly not. They’re thinking about cost of living. They’re thinking about interest rates. And it’s not that we don’t think about things like that too, but we’ve got, we’ve got an elephant in the room that makes, you know, it sometimes takes our attention away.

So sometimes you do have to shape the national psyche and say, do you realize what’s happening over here? Because the irony is, is that even if the government do this, then they save lots of money. And they’ve said that getting children out of the NDIS is going to help them reach a third of their target, a third of their budget target.

Even if they do. Well done. Excellent. Congratulations. You, guess what? You didn’t support those children all the way through school. And guess what? They’re going to grow up one day.

And if you haven’t supported them, they will have issues. They will potentially be a lot more disabled. They may have mental health issues, the pressure on the family. You, it’s going to cost you a hell of a lot more in the long run.

Trust me, if we don’t do the right thing, that is both clinically the right thing, morally the right thing, but ultimately it will end up costing you a lot more money. So this is just, it’s silly politics. And I wish I could say it’s easy to make governments think differently, but they often think in three year terms. And this one, sadly, is no different.

Jane McFadden:

Yeah. I completely agree. Let’s wrap this up because I could talk to you forever with a call to action. So I’ve got my jot form that you mentioned to me.

For anyone listening, I’ll put the link in. I created a small form for providers and also for parents to document their experiences. I’m more than happy to share this with Nicole at Autism Awareness.

And then if she gets in front of the new minister or anyone that she thinks could be relevant, we can share those stories by putting whatever you like on there. So you can fill out that jot form. We can contact our local member, as you spoke about earlier, Nicole.

Is there anything else that I’ve missed if people are wanting to put their energy into something that would be helpful?

Nicole Rogerson:

Oh, look, I think what you’re describing is it’s going to sound frustrating to families because you think, hang on a second, what am I doing? This isn’t enough. This is my child. This is right now. And it’s going to be really frustrating to me to say you’re going to lose a bit of time.

So you have to come back to yourself as a family. Yes, your local member, but remember that’s both the state and the federal level, because this is a bum fight between both of those two levels of government. And I think it’s really important that your state politicians are hearing from you as well to say, okay, you guys agreed to take our families out of the NDIS. I’m out now. So you agreed to take me.

What have you done yet? And they know they have to do stuff, but they’re not ready. So it’s important to let both of those systems know. It’s important to be a community.

Exactly what you’re doing, Jane, is hearing from those families, emailing us in at Autism Awareness and telling us your stories, telling us if you’re prepared to go on the record and talk about it. And yes, I am going to see the minister. I’m in Canberra.

Every time there is a sitting week, I am walking the halls. I am looking for people to remind — you’re about to make a terrible, terrible decision. And that’s fine. They can make it and tick a budgetary box, but it will be us here in a year’s time, telling them the stories of the unintended consequences that I suspect will happen if they allow these reforms to go through.

I’d love the government just to say, let’s put a pause on it. Let’s set foundational supports up and then we’ll come back to reaching this target. And maybe that’s something they will do. But when we’re a few weeks out from an election, the reality is they’re unlikely to make any changes between now and then.

So buckle up families, gird your loins, stick together as a group because we’re better as a community than we are split. But also I don’t want to leave people feeling despondent either, is that we know kids with autism need good support. We know what that support looks like.

And sometimes that support will go away for a time. So go back to first principles. What works for your child? How do you make them feel successful at home? How do you make sure they’re getting lots of positive reinforcement for the stuff that they’re doing that really is good?

So I think there’s stuff that you can do as a family, there’s stuff that you can do as a community. And by all means, working with your school and not in a combative way, say, look, I understand this is frustrating for you. It’s frustrating for us. We’re nervous. How do we try and support this child before foundational supports arrive?

What can we do between the school and the family to work collaboratively? If you’ve lost your funding package, what do we do in the meantime? And I think calling out to the better angels to work out how we support these kids in the interim. And I promise you I will, and the team here at Autism Awareness will be walking the floors of every parliament across Australia, making sure everybody’s well aware of what’s happening to our families right now.

Jane McFadden:

Perfect. And you know, ADHD mums, neurodivergent parents, or neurotypical parents with neurodivergent kids, we are fighters. We’re used to fighting. We don’t want to use the word fighting, maybe advocating. We’re used to the battleground.

That tends to be where we live within family dynamics, extended families, the way we parent, everywhere we go seems to be a discussion point for what we are dealing with daily. So what I might do is I might put up some templates on my website so then people can click them. And then when they send an email to the local member, they actually have a template because I just was thinking when you were talking, what would ADHD mums write? Like I think it could be stuck.

So I might put some templates on about what would be plug and play to make it easier. And then all you’ve got to do is plug in your circumstances and send it out to your member. It’d be a lot quicker without all that questions of what will I say? How do I even begin to describe this issue?

Nicole Rogerson:

I think that’s a great idea. And I’d also encourage families to not feel despondent about that advocacy role that we’re, that, you know, that we often, we take not because we wanted it, because we got it. But I’ve found over the years and is that it gives you a certain power as well.

It’s frustrating. It’s exhausting. You think you shouldn’t have to do it. Shouldn’t the system work better than this? Why do I have to constantly advocate for my child?

But the wonderful thing about being the child of a now, you know, almost 30 year old is he 100% knows he’s got a Team Jack and we have been Team Jack and we’ve been running Team Jack for many, many years. And I no longer look at it as exhausting. I look at it as empowering.

There is nothing we’re not going to get over for this boy. And I’m sure there’s lots of mums listening to this right now who might feel exhausted. I get it. I’ve done that. I’ve had a few tears, but rough it off ladies, because, and dads, because there is a massive power in it later on because your child will be an adult for many more years than they’re going to be a child.

So this is a blip, but this is a small period of time you’ve got to get through. We’re playing a long game here. You want a five, 10 year rule as to what direction you’re heading in for your child. So don’t feel despondent about it. It’s, you are a superpower. It’s your superpower.

Jane McFadden:

That is hilarious. I’ve been saying to my hubby, oh, I’m like dreading if the NDIS send me a reassessment letter. And he spun it around the other day. He goes, oh, I’m, I’m pumped. I’m pumped.

Dana would not know what they’ve got ahead of them if they send you a letter. He’s like 90 days, you’ll be like getting out your boxing gloves.

Nicole Rogerson:

That’s it. We’ve got a couple of staff in here who are a bit nervous too. And I’m like, come on, bring it on ladies. Come on. We’re up for this.

But, but, you know, I think I could promise you in this is Autism Australia takes this very seriously in the fact that it’s on us to call out the nonsense. And I would call all disability organisations to grow a bit of a backbone here because yeah, sometimes it feels a bit nerve wracking going out there publicly and calling out a government and calling out a policy, but that is our job.

That is our reason for being — making sure that the world is a better place for kids with Autism and ADHD than it was 10 years ago, 20 years ago. And whilst I think it is a little bit better, we have still got a long way to go.

So, you know, we’re not going to stop working and, you know, but we need families to tell us their stories so that, you know, we’re making sure we’re representing you well in Canberra and all the other state capitals.

Jane McFadden:

Absolutely. Well, thank you for your time. And for anyone who would like to check out Nicole, I’m going to put all of her information on the show notes. Thank you so much. This has just been such a great interview. I really appreciate it.

Nicole Rogerson:

Not at all, Jane. Thank you for having me. The key message here is you are not alone.

Jane McFadden:

Thank you for listening. If you enjoyed this episode, follow us on Instagram or head over and join our amazing ADHD Mums podcast Facebook community. Everything you do matters and helps to spread the word about what neurodiversity in females looks like.

 

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