Wednesday, 16 June 2021
Statements by Senators
I've been a little bit vocal of late around the NDIS and the proposed independent assessments. But the reality is that I have been vocal for a lot longer around the issue of autism. So today I wanted to personally thank all of the families of children with autism and all of the autistic adults who've written to me over the past couple of weeks thanking me for being in their corner. Their stories are like my family's: concern for our children and what the future has in store for them; and how we can best ensure that their life is filled with opportunity and, even more importantly than that, that it's filled with dignity.
One of the most concerning issues that I have had raised with me in a number of instances was that we're seeing that the NDIA is currently refusing to fund evidence and research based best practice therapies for autism, claiming that they are not reasonable and necessary. I mean, seriously—best practice, globally recognised with evidence and research, not reasonable or necessary! I really would like to know what they consider is reasonable and necessary then.
But what is actually more concerning when you consider this is the number of families who've now been forced to go to the Administrative Appeals Tribunal. This is not being upheld as a decision. Either it's sorted out before or, once it hits the tribunal, best practice, evidence and research based behavioural interventions are deemed reasonable and necessary because they are best practice. So, at a time when we're talking about sustainability of the scheme and ensuring that it is there for the future of all people with a disability and, in fact, for all Australians—because you never know when you or a family member might require the scheme—we are seeing costs being expended in fighting families who want best-practice therapy for their children, who want to use evidence and research based therapies, and forcing them through an expensive process at the Administrative Appeals Tribunal with, of course, agency lawyers fighting against them.
So what I thought I would do is explain to people what best practice early intervention looks like for autism. This isn't my opinion. This isn't just my thoughts on the matter. This is something that is globally recognised. We talk quite often about the US's health system not being as amazing and about how we're so fortunate to have universal health care here in Australia—they have an insurance model over in the US—but the only therapy that is covered in every single state in the US by all insurers, absolutely, in law, is best practice behavioural intervention known as ABA, applied behavioural analysis. I know there are people out there that are about to freak out, because ABA has some connotations which are not founded in fact but are founded in thoughts and beliefs going back decades, but we might move to 'early intensive behavioural intervention' as a name to try and moderate the ABA hysteria.
If we go back to DSS, the government's own department, and we look at the good practice guidelines for autism—for some reason they changed from 'best practice' to 'good practice'—under the Helping Children with Autism package, the only evidence and research based therapies that were approved were ABA and EIBI, early intensive behavioural intervention.
If you go to the Raising Children Network—look at it up, because it's run by the government and it's up to speed with a very well maintained site. It's great resource for parents of all children. They actually have tabs there on the front page on their website for autism and disability. You don't even have to go digging for them. When you click on 'Autism' and you look at therapies, the very first therapy that comes up is applied behaviour analysis. But this is deemed, when parents ask for it, unreasonable and unnecessary. That is, until it gets to the AAT, and thankfully those families are receiving the funding.
If we want to look overseas at the National Autism Centre, a very well-respected agency in the United States, they've actually listed 14 established interventions for children, adolescents and also young adults. In fact, they also included intervention established and identified for adults, and every single one of them, including the very first one, looks at behavioural interventions.
Because most people don't understand what a behaviour is, people think a behaviour is a tantrum. You're having a bad day and you have a little bit of a wobble: they think that's a behaviour. Behaviour is everything we do. A behaviour is washing your hands, something we've been encouraging people to do a lot of recently! But I bet people don't know there are nine steps to washing your hands, and, when kids with autism are taught to wash their hands, we teach them in a way called backward chaining. We reinforce positively, we reward, we celebrate them getting the steps right. We start with the drying of the hands because that's the last step, and we teach them backwards as we go through every step. The only thing we don't teach backwards is riding a bike, because you've got to put your helmet on first! So there is a little safety element to it.
Even in Australia recently there's been a research study done in a bid to debunk this obsession that ABA or behavioural interventions are somehow a form of torture. Monash University, along with the Autism Behavioural Intervention Association, ABIA, have done a study. I don't have time today to run through all of it, but I would like to just highlight a couple of things for you. One of the things we hear is that ABA and behavioural interventions are clinic based, that somehow they're not natural; they don't occur in the home or the natural environment. When this survey was done of practitioners and families and participants, they found that 88 per cent of therapy is actually done in the home. I would have thought that's a pretty natural setting where you can teach kids what they need to learn—not in a clinic, not in a centre but in the home.
Clinic based programs play a vital role as well. The reason that they are so important is one of the things we do see in families with autism, but also families with disability more broadly, is that very often one of the parents is forced out of work. I know this. When we ran our intensive early intervention program, I didn't work; I worked from home. I set up an autism charity. I didn't get paid for a few years, which is pretty difficult when you're funding an incredibly expensive and intensive early intervention program, but those are the sacrifices that families made pre NDIS and they're the sacrifices that families continue to make even with the NDIS, but they certainly don't need the additional hurdle of being told that best practice therapy is not reasonable or necessary.
You might ask why the agency would oppose this considering this is an insurance scheme—invest early: better outcome. Synergies Economic Consulting have done a research project on this, and what they established is that every dollar we spend on intensive early intervention will save the community $11 over the course of the life of that child. It adds up to a saving of almost $2 million per child, if we give the intensive, quality early intervention that's required. Why would they oppose a therapy that actually takes data in every session? There's no wrong answer: they either get it right or they're prompted to do it. There's no right or wrong. No-one's punishing the child. But we have data. When we're teaching them to hold a pencil, or put their pants on, or toilet-train or sit at the dinner table and use a fork, we take data every step of the way. So, why wouldn't an agency that is fundamentally giving taxpayers' monies to families and to people with a disability want to see what they're getting for their buck? I would have thought that would be a logical therapy option for them to look at.
I would like to point out that some of the detractors are vicious and unnecessarily mean-spirited—and that is the nicest way I can put it. I've received letters telling me that my son's more susceptible to being sexually abused because he had best-practice therapy, that they hope he grows up to hate me and not speak to me anymore because of the best-practice therapy that he received, and that somehow I inflicted torture.
I know that a number of people in this chamber know the relationship I have with my son, and I think we can probably all agree that he's ridiculously spoiled. He is my favourite human in the world, and I would do anything for him to give him the best opportunity at life. This is the best-practice therapy, and it's about time we recognised it and funded it properly.