Episode 57 – The NDIS Shake-Up and National Autism Strategy: What Jane Really Thinks

Jane McFadden:

Hi, I’m Jane McFadden and welcome to ADHD Mums. Today I want to talk about something that’s weighing heavily on my mind and that is about what is happening to some of the most vulnerable members of our community, which are our autistic children and their families. When I think about the autistic community, I see a group that is often overlooked, misunderstood and left without a proper platform to advocate for themselves.

Families are left fighting battles that we shouldn’t have to fight just to get the supports that our kids need. Autism makes up the largest proportion of participants on the NDIS. That is a fact. So why does it feel like this isn’t being treated with the seriousness and the priority it demands?

The introduction of the National Autism Strategy should be a moment of celebration. It’s a plan that aims to address the gaps, promotes inclusion and support families who aren’t eligible for the NDIS. But here’s the catch. At the same time that this is rolled out, children are being removed from the NDIS in large amounts. Recent reports show that a third of the savings from the NDIS reforms will come from cutting children from the scheme. That’s thousands of kids losing access to therapies and supports they desperately need.

Families are feeling abandoned. They’re left to rely on systems like Medicare, which just aren’t equipped to fill this gap. The out-of-pocket expenses for therapies are becoming unmanageable and parents are left feeling hopeless.

It’s hard to understand how we can celebrate the new autism strategy while at the same time we’re quietly taking away the lifelines from people who need them the most. Families shouldn’t have to choose between losing funding now and also waiting for the promises of the National Autism Strategy. I love the National Autism Strategy. The problem that I have is it doesn’t fill that gap now. We all want the NDIS to be sustainable and I know that a lot of other parents will agree on that, but we can’t have it be sustainable at the expense of our children’s futures. The decisions around the NDIS feel really short-sighted to me and they leave families feeling abandoned.

This episode is about digging into what’s really happening, how it’s impacting us and what we can do to demand transparency and ensure the changes work for us, not against us. So let’s jump into it. The National Autism Strategy First Action Plan has introduced several initiatives that directly impact parents of autistic children.

Now these are great, exciting new steps forward for families. This is targeted support and a vision of a more inclusive future. However, the strategy’s release really coincides with the most significant NDIS reforms I’ve seen, raising concerns about the disconnect with the long-term planning and the immediate needs of families who are losing these supports.

So let’s have a look at what is in the National Autism Plan. The National Autism Plan has announced $19.9 million over four years for peer support programs. Community awareness and education is the second phase and that is going to be $915,000 over two years.

There’s also going to be diagnostic resources which will develop resources to assist autistic individuals and their family pre- and post-diagnosis information. That’s $445,000. There’s going to be employment pathways, $915,000 over two years. There’s going to be $12.2 million over five years in research and policy development. There’s $3.7 million over two years into the evaluation of existing programs. There’s also going to be $2.8 million over four years for a comprehensive study into the prevalence of autism and for future policy development.

Now, I love a lot of the strategy. I love particularly around creating a more inclusive community, a more inclusive world. The problem I have with it is that it’s not immediate relief for families today. That seems like a great long-term plan but I’m not sure what we will do in the gap now. What will families do today and how will that strategy help them now? That’s the part that confuses me. And it feels like this is the elephant in the room that nobody’s talking about.

When I first saw the National Autism Strategy released and a lot of people online celebrating it, I just kept thinking, but why is nobody talking about the NDIS at the same time? Maybe there’s something I don’t understand. I must be wrong because I can’t see it as a celebration because it doesn’t actually solve the big gaping hole that families have now. So whilst the National Autism Strategy is a positive step, you can’t ignore the simultaneously changes within the NDIS.

The government is saying that the changes are all about making the NDIS sustainable. They’re talking about cracking down on fraud and rorting the system but the truth is that the savings from fraud are really quite small compared to the cuts being made by removing kids from the scheme. It’s been reported that the government estimates that fraud crackdowns will save $200 million over four years.

Now that sounds like a lot. However, removing children from the scheme is $125 million in saving every three months. That’s $500 million a year. So whilst they’re talking about fraud, the real savings are coming from the families who are losing access to the NDIS. It’s being reported that the government is sending out 1,200 eligibility reassessment letters a week. These letters demand evidence, more reports, more documentation about your child’s disability.

If you can’t provide the information in 28 days and if what you do submit doesn’t meet their mysterious criteria, your child can be kicked off the scheme just like that. I’ve seen a couple of these letters. These have been emailed to me and it basically acknowledges that your child needs intensive ongoing, let’s say for example, psychology but then says the funding will be revoked because of eligibility.

But it doesn’t actually say what part you have not met in the eligibility or give you a way to move forward in terms of, look we haven’t seen enough information on daily living, please could you provide some more on that. So you basically have to go in blind and try and figure out what would make them eligible because you’re actually not told. So we know that last year alone, over 6,000 children under the age of nine were removed. That’s 3.35% of all children on the NDIS.

And if we look at the reason that the NDIS is saying that they’re removing these children, they actually are saying that it is because they have been successful. That child has achieved their goals. They don’t need funding because NDIS have sorted them out, they’ve had a look at them and they’re going so well. Now as somebody who has a lot of experience with the NDIS, it’s actually really confusing because yes, there are goals in each plan, but I have not seen anywhere where this is really tracked or monitored.

A lot of people have got goals that are quite general around improved independence or community access. The parents I’ve spoken to have said how would the NDIS even know if they are achieving their goals? They don’t track this and the parents have not said that they have achieved their goals at all. They’re really in desperate need of support. They may have made some improvements, but their funding have been stripped anyway.

So to have a family be told that the child has achieved their goals and is all better, and you know I’m air quoting when I say all better, but that’s kind of like the consensus behind it, is devastating and inflammatory, frustrating, overwhelming and patronising. The system is full of errors and the families who fight these decisions often have them overturned and prove that mistakes are being made. But not everyone can fight. Not everyone has time, resources to take on the NDIS. And if you don’t, then you are just left with nothing. And we really need to take a moment to acknowledge the emotional impact.

For parents, the stress of navigating the NDIS is overwhelming. Now you may have done a couple of years worth of reports and assessments and waiting to get to this point and now you may not be approved. That is devastating. You may have been hanging on and you haven’t got there. Or you are on the NDIS and now you have the constant worry as to whether your funding will be cut. The strain of having to pay for therapy, the guilt of not giving your child what they need, or the fact that you had it but now it’s been taken away.

What about the schools? What about all of the resources and the early intervention that we were doing in primary schools? The fact that we were doing so much work behind the scenes with kids to set them up for success in primary school. What about the poor teachers who have now got children who aren’t even being supported? They aren’t getting the therapy, they aren’t getting the help. What is the teacher supposed to do? They can’t do that as well. The teachers in the school system is under complete stress. Can your child even go to school five days a week?

What about all the kids who aren’t able to go to school and they’re relying on NDIS for those supports? Because without the therapy and the support, their development can really stagnate and even regress. In the years that matter the most, I believe that we are failing them. I don’t think we need money and time into the employment pathways at this point. How about we keep the employment pathways where they are and help children get to the current employment pathways.

So where do we go to from here? The National Autism Strategy sounds really promising but I don’t think it addresses the immediate needs of families. It doesn’t replace the NDIS, it doesn’t solve the issues that are leaving families in the lurch. We need to keep pushing for change. The NDIS are going to continue pushing children out of the scheme, I believe, this year and beyond.

We have children that have got siblings that were eligible on the NDIS but are now no longer eligible. And we know that early intervention in the space between zero and nine is the best place to put, I think, government resources into those children. Because that is when the brain is developing and they can get some of those really important life skills, particularly around communication, speech.

There is never a more important time, I think, to put in resources to give kids the best opportunities they can have. We’re talking about people being able to communicate for themselves. I can’t see anything more important than helping a child learn to communicate if they are struggling with that between the ages of zero and nine. And it would be a terrifying thought, I think, if I was the mother of a child who had a significant communication issue, to not be able to pay for those big out-of-pocket costs to get that child the help they need.

Now these families are now being redirected back to the overstretched public systems, into Medicare, which are ill-equipped to fill the gap. And they also have massive out-of-pocket costs for therapies. This is becoming unmanageable, and families are then left without essential support or being left with big questions like, should I spend the little amount of money I have on speech or psychology? What is more important if they can afford either? These families often have multiple children. So think about the price per session, per child as well. The time off work.

And we know that often in families of autistic children, there is often one parent who has to work part-time to manage the therapies and all of the different supports, and to really be there for the children who may not be able to go to school full-time. So let’s have a look at the NDIS factually. We know that the government has been tightening the NDIS eligibility criteria, and that started on the 3rd of October.

One of the biggest groups affected is autistic children, particularly those who are classified as Level 2. And I have a bit of an issue with labelling and classifying people with 1, 2, and 3, but I’m not going to get into that at the moment. But what the NDIS is saying is that they want to go back to what they were doing, which is more complex needs. So it was a little bit like when we had Level 1 autistic children that were getting onto the NDIS right back in the beginning.

And then suddenly the NDIS said, well, you can apply if you’re Level 1. But then they started just not approving anyone who was Level 1. And the kind of the word got out amongst the community that you really need to have a Level 2 to bother applying for the NDIS. If you don’t think you’re going to be getting a Level 2, it’s probably not worth the $3,000 assessment. That was the word on the street from parents.

But now it looks like Level 2 is the new Level 1. And actually what I miss is my personal opinions. I think the NDIS are looking more for a Level 3 to be accepted towards the NDIS. That is kind of what they’re saying with complex needs, I think. And again, please, I don’t like labelling 1, 2, and 3. That’s what the NDIS does. And that’s what the assessment process does that they require, which is why I’m talking in those terms.

So for them to move the Level 2 needs out, this is what it looks like in real terms. And again, this isn’t written on their website. This is what it looks like is happening and is being reported on around the country. Families are receiving letters to say that their children no longer qualify for funding or that their plans have been reduced. They’re getting phone calls out of nowhere. And they’re actually acting as a review without the parent even knowing that that’s happened.

Now, these decisions are happening at the same time as the rollout of the National Autism Strategy, which is supposed to be a big win. But this is very confusing. We know on the 3rd of October, there was a changing of the definition of the NDIS supports and your child or yourself needs to have lifelong NDIS supports, which has really not been well defined. We’ve seen art therapy, music therapy all be reduced and small businesses go under.

It’s been awful. There’s been a lot of bankruptcy within this area of very small businesses, often parents of autistic children who have set up a small part-time business around their child and having a rental agreement in a space and then being unable to pay and being given no notice by the NDIS. We also know there’s been all the changes with the sensory items because apparently there is enough evidence that sensory items really help. I can’t even get started on that, so I’m just going to leave it there.

There’ve been changes to respite and changes to the way that the payments are made. And now from what I understand from plan managers, what they’re being told is that if they are paying invoices, it is later deemed were not correct, that NDIS planner will have to pay back that money themselves. So what it means for the parents is that if you have an NDIS planner paying your bills, it is very, very difficult to get anything paid because the NDIS planner, rightly so, is terrified they’ll be left with a massive bill if they are audited by the NDIS.

There are many reports on psychology particularly around plan reviews when parents are being told that psychology sessions are a Medicare expense and that they’re going to be removed from the plan. So capacity building is only in certain areas which reduces your bucket of funding even further. Parents are also reporting that they are getting a letter from the NDIS saying that siblings no longer qualify. And there is apparently the removal of the behavioural and social criteria amongst early intervention.

Now if you’re wondering where I’m getting this information from, I’ve been running a jot form since October about what is actually happening on the ground in the NDIS as opposed to what the NDIS is saying is happening. Now the announced changes do not match what parents are saying. They have announced changes but they haven’t said how they will impact and they have left out certain information. The link to the jot form if you’d like to add in your own experience is going to be on the show notes.

Now I’m going to read a couple of the forms from the parents’ experience. I have lots. I don’t want to list them all but I’m going to read out some of the important ones that I thought are really great in terms of this information here. Now in terms of early intervention, the website says that early intervention requirements have been updated to clarify that a person should only access the NDIS if they require supports that are NDIS supports. Now it’s that change to the definition of NDIS supports that has started to change early intervention and the eligibility requirements.

So if this is not making sense to you and you’re thinking it’s just a very small wording issue, you’re right, it is. But by changing what an NDIS support is and changing that definition, it drastically changes the requirements for early intervention. Here is a jot form from Rachel.

My youngest daughter who is three has been rejected to access early intervention. My son had a similar application and he has been on the NDIS for two years. My daughter did not meet criteria because she didn’t have any physical developmental delays as they no longer consider behavioural or social reasons to access early intervention. I believe they need to add behavioural and social issues back onto early intervention.

Now that has never been listed that they have been removing those criterias. So you may need have more delays in other areas because behavioural and social are no longer making up those multiple areas. But in terms of an autistic three-year-old, I would imagine behavioural and social making up a lot of the areas that they would be developmentally delayed in.

This is from Hayley.

My daughter has been under the early intervention scheme since she was two years old. She’s been using it for speech therapy, social skills and her developmental delay with mobility. The financial support we have had from the NDIS has enabled her to make progress in these areas. However, our funding has now been stopped because she doesn’t meet criteria anymore. I have spent thousands of dollars on numerous reports and assessments supplied to the NDIS to back up her continual need for the assistance.

But we have been told no, that we no longer qualify even though we qualified before. We have to make cutbacks in other areas of our own general spending. I don’t know what therapies we can now afford because of the ongoing support and therapy that my daughter needs. I’m so concerned for her future. I really believe that we need to be individually assessing and not putting all of these children under the same banner. Hayley says that she has no idea if she will be able to continue any of these supports and her daughter is only two.

A survey from Bonnie.

My daughter is three years old and she has a severe speech impediment. This has been diagnosed and identified by a speech pathologist who works with her. She has social anxiety and she has a lot of self-care difficulties but we have been denied funding. We along with her educators from preschool suspect she’s autistic and really believe that she would benefit from early intervention. We applied for early intervention funding.

We attended all of the inner city appointments despite living regionally. We provided documentation and assessments which cost me thousands of dollars. We went through the early intervention provider in our state and have now been denied. The assessor involved stated that our daughter did fit all the criteria but there was not enough evidence received as most of it was social behavioural. However, the assessor never sighted, met or spoke with our child.

We are low income earners and we currently pay for speech pathology fortnightly but we need to move to weekly for the severity of her condition. We cannot afford psychology support due to ongoing functional constipation anxiety. All of the community health providers have been stumped and say that we need to see specialists. All agree that this is probably an autistic presentation.

Additionally, my work capacity is impacted due to my difficulty that my child has attending care. We need to engage an OT to support her but this is all out of pocket. We are being quoted over $180 per session. We only are given five sessions by the GP which is leaving us with a massive gap payment. I believe that we are going to likely have ongoing difficulties in school and beyond. I don’t understand why social and behavioural is not now eligible.

They say that speech, behavioural, social and fine motor is now not enough for the NDIS early intervention.

Last one is from Amy.

Amy has two autistic and ADHD kids who are relying on therapy access. We have no external supports. Both of my children are rated as level 2 but the NDIS say they are not eligible despite the website saying they should be. I can’t access the NDIS for my own level 2 autistic and ADHD and my chronic illness because they say that I don’t meet requirements now.

I think the reason this has happened to us is because the reduced support for social and behavioural therapy. This is going to result in me having to self-fund therapies required. I work part-time. I don’t know how I can do this. I am a single mum and I have no capacity to access any appointments for my children. I don’t know what I can do.

I believe there needs to be early intervention and funding in the early years for all families up until the age of 10. I really believe that caregivers need support as well and a lot of these people have finished off with please help us Jane. What can we do? Just reading the sheer amount of these forms have just been horrific to be honest.

So the real catch with the autism strategy is that it isn’t designed to replace the individualised support that families were receiving from the NDIS. I love the broader initiatives like peer support, community education but they don’t actually meet the immediate needs of the family losing access. I personally believe that the most important part is early intervention for the children under nine and support for those families on the ground.

We are all people and we are individuals and this is why I don’t believe that peer support, community engagement, I think that’s great but that is not going to replace individualised therapy and care by allied health professionals. It can’t. Each child is different. Each family is different. What works with one child doesn’t work with another. A peer support program and a more inclusive community is great but that does not help the child and the family today.

What happens to the parents that just need to get their kid into the car? They just need to have their child at school. They just need help with emotional regulation. What happens to all of these children and all of these families? What is the impact on the mum? What is the impact on the family and the marriage and the support and the partnerships of those families? Where is the support for the single mums and the people that don’t have any extra money financially to pay for these things?

Honestly, I don’t think they ever should have bought out the NDIS if they didn’t know what they were getting into because creating it and allowing people onto the scheme and then taking it away, I think is worse than never having it. It’s to give people the support and then just take it away from them. I would love to see the National Autism Strategy actually start advocating for some of the families. Let’s put some resources in, in the gap of those families where they are at crisis right now.

That’s what I think would be great. Or who is advocating for these families now? I think the families really need clarity and reassurance at the moment. And why is the largest proportion of NDIS participants that are being targeted for the CARTs autistic children? Why is that the case? I think it would be amazing if the National Autism Strategy could complement the NDIS.

Because at the moment, it is a complementary strategy. It is a complementary to the NDIS. And having the strategy and rolling that out, I don’t want that to be have a look at this shiny object, the National Autism Strategy, how great. And then don’t look over here while we just take all of these children out of the NDIS. We need to have a look at the emotional toll on the families and the emotional strain.

Imagine being a mum, or you may not need to imagine it because you may be a mum, who knows that your child needs support, but you can’t access it. Imagine feeling like you failed your child, not because you’re not trying, but because the system isn’t supporting you. You don’t have the money to actually pay for what your child needs. So here’s a question, why? Why is this happening? I think this is a question that everybody is going to want to know.

The government has defended the changes by saying these following things. Budget constraints and sustainability. Now the NDIS has faced criticism for budget overruns and tightening eligibility is framed as a way to ensure its long-term viability. It’s saying it’s going to be providing more help in a better way and it’s doing it to help the participants.

Now that I have a problem with because that is completely untrue. I can’t see how we can call this sustainable or doing this to really help people in a better way if it leaves the most vulnerable without support. Taking that many children off and starting with the kids under nine does not seem like a scheme that is ensuring it’s really going to be there for people that need it, which is what they are claiming. They’re claiming that they are doing this to help in the most effective way.

There’s also a lot of talk around the providers and fraud and the NDIS is cracking down to get the providers and all of this fraud. Yet that doesn’t actually seem to be who they’re targeting. So I do get very frustrated because I think that we need clarity. I think that we need more safety nets and we need to prioritise the early intervention.

The government is also arguing that broader initiatives like employment pathways and research are going to benefit the autistic community in the long term. However, the families need help now. I love research but I don’t see how research is going to help today. The long-term promises are not going to pay for the therapy session that your child needs this week. And that is where I think someone needs to fill this short-term gap.

I don’t think employment pathways are going to be the priority for the parents of the children who are under nine, under 12, who are growing up now. If you have children that don’t receive the best care in terms of increasing the communication particularly, and we have children that could be improving a lot more whilst their brain is growing and in that beautiful neuroplasticity stage, that is where we need to put the resources in, not in employment pathways when the child hits 18. I believe we’ve got to do it way earlier when the brain is developing.

The long-term pathways for employment is not my problem today. I’m actually concerned about what they are learning today and how their brain is developing. Now this situation really feels like a cruel contradiction to me. We have one hand, we have the National Autism Strategy that promises to address these systemic gaps and inclusion. On the other hand, we have children being removed from the NDIS.

But then we’re being told we’re building a better future for your child but in the meantime, good luck just keeping your head above water. This isn’t just frustrating, it’s harmful. Early intervention is critical for children. Without the support, we risk having outcomes that aren’t great down the line, not just for children but for also families and their communities.

So what can we do? How can we move forward? These are a few of the steps that I’ve written down but it’s a really tricky one. I understand that we need to ensure NDIS sustainability and I think we can all agree that the NDIS did not do its research well enough in terms of autistic children, autistic people and how many participants they were going end up with on the NDIS. Clearly, that was an error and they need to figure out how to make it sustainable.

But I don’t think we can make it sustainable by excluding children who need support. I don’t think tightening eligibility criteria should mean cutting kids off. I think we need to improve the processes to ensure it’s fair. There needs to be immediate support during this transitional time.

Now at the moment, it’s been reported that there’s 1,200 letters going out to families every week of autistic children who are mainly level 1 if they snuck on initially on level 1 or level 2 and they’re giving them 28 days to go and get reports and come back and prove their eligibility with the new criteria. I don’t know about anyone else but there’s no way you can get a report in 28 days. There’s just no way.

I’ve never heard of anyone getting a report in 28 days. You can’t even get an assessment in 28 days to get in, let alone get the report complete. And when they can’t get the report because of the ridiculous time frame, they’re just getting a letter to say you’ve lost your funding. But where is the safety net? I think the public systems like Medicare need to be equipped to handle this increased demand and this needs to happen before the families lose funding, not after.

So we can’t wait to get to crisis point and then have a crisis and then try and add some things to Medicare to band-aid over a massive problem. I also think we need to be really a bit more transparent about the National Autism Strategy. We really need some clear answers. How can this strategy directly address the cuts by the NDIS? How will the allocated funds be spent and when will we see tangible results?

I would love to see some hope right now. I love the strategy. I love where its heads are. But I’m also like, as the NDIS is leaving families just left, where is that gap? Where is that allocation of funds? Where is the help? Where can we apply for crisis financial help? Because that’s where people are going to end up. I think we also need to have more accountability because we can’t just announce a reform.

Can’t we track the impact? Where are the savings from the NDIS actually being used to support families in other ways? Are the promised programs under the National Autism Strategy delivering results? As we are taking the money from these children who are on the NDIS and we’re told that it’s going to be put into public systems or the National Autism Strategy and they’re going to be supported in other ways. Well, what are those ways? Where is the money going? Let’s hear from some people who have had a good experience. Where can we apply? Where do we go? There’s been absolutely no information given out at all.

I don’t think we can just shift the burden and the responsibilities back onto families, particularly when we’re in such a high price of living time at the moment. I also find it really confusing to be honest about, and I’m not a political person. Maybe there’s a really simple answer, but I don’t even understand why you would take money out of the NDIS and then put it into the National Autism Strategy.

The majority of the NDIS participants are autistic, so why create a new strategy when you could leave the money in the NDIS? I don’t even understand how that has happened because it’s confusing to say the least. So there has been so much going on within the family space within the NDIS, but there doesn’t seem to be any accountability or any space that people are even talking about this. So if you’re looking for something, please go and fill out my jot form.

Please write to your local MP and continue to make noise, share this podcast episode, share on social media. I wonder sometimes if the government is just trying to do this so quietly, or perhaps look at the shiny object of the National Autism Strategy and rely on us, the autistic community, being too vulnerable and not having enough of a voice to really question this. If you’re feeling the impact of these changes, you are not alone.

We need to continue to stick together, to demand change, to write to our local members, to share on Facebook and social media, and to keep asking questions, to keep pushing back. Because we are a vulnerable population, but we can’t be silenced. We won’t be silenced.

I think we should start demanding inclusion, and that is on in the broader society context. Yes, that’s great in the long term, but what about today? What about our kids? I really thank you for joining me on this important discussion. If you’ve got any feedback about my episode, please send me an email. Thank you so much for listening. The key message here is you are not alone. Thank you for listening.

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