What does your typical work day involve?
I start off by moving around the site and staff body, finding out how the day is shaping up as our teachers and therapists prepare programs for the day. Often, we’re getting feedback from families from the night before about how the students are going. On any given day, there may be some students who are having difficulties, while others are having great mornings. Every day is different at Giant Steps, so we’ve got to be prepared for the unexpected – both positive and negative.
For the rest of the day, I’ll meet with families and other stakeholders in the students’ lives. This is critical as our students have really complex needs. I also spend time in the classroom, supporting our teachers and students, or at our adult day service, where we are constantly looking for fresh ways to deliver the program.
Finally, like any school Principal, I work with the leadership team to support our team on the ground. It’s very important that we’re connecting with them and ensuring that they feel supported in their roles.
What do you find most rewarding – and most challenging – about your role?
The most rewarding thing is seeing students engaged in learning. Often, with autistic children, people talk about behavioural issues and they measure success by the absence of them. They’ll say, “Oh, we haven’t seen any behaviour today. Everything was calm, everything’s OK.” But that’s not what we’re about; we’re about having students engaged in learning. When the students are engaged in learning, we see their individual growth and, over time, their quality of life improves. For some of our students, progress can be slow and you have to wait to see the fruits of their engagement. It’s a constant reminder that you need to check in over different time periods to see how the students have progressed.
The most challenging aspect of my role – and any manager will tell you this – is the staff. This is not to say we don’t have a great team; we do! But the most challenging part of my role is bringing together all the different professionals who are needed to support children with complex needs and ensuring that they are all pointing in the same direction. There is a complexity to this, but it is also what makes Giant Steps unique.
Another big challenge is making sure that we are able to meet the financial needs of the organisation, year-in and year-out, through fundraising – because at Giant Steps, we don’t charge any fees.
Where do you get your funding?
We get about 50% from the government, and then it’s up to the parents, the staff and the Board to drive the fundraising. We have an annual ball, plus other fundraising events throughout the year. Some parents are able to make donations to the school, but there is no requirement to do so. Of course, like all not-for-profit organisations, we are always seeking grants and sponsorships. Future Generation has been one of those incredibly important sources of funding. This year, our fundraising target is nearly $5 million, which is huge for a small school like ours, so it’s a constant challenge.
Giant Steps was set up in 1995 by a dedicated group of parents. How has it evolved over the past 27 years?
The school came about because of parent dissatisfaction with lack of services; there was nothing that met the needs of their children. Critically, they recognised that they needed to bring together teaching and therapy. They found a model called “Giant Steps” in Canada and based the school on that. We look very different now, but the idea of teachers and therapists working together remains vital.
These days, the school has evolved into more of a classroom-based setting, so it feels very much like any other school, as opposed to a therapeutic centre. Over time, we’ve brought that sense of learning as a group, rather than as an individual. We’ve also put a much stronger focus on curriculum and making sure that we’re giving our students the same opportunities that are available to all other students in New South Wales. Of course, it’s individualised for our students, but giving them access to the same syllabus and content as other students is very much at the heart of what we’re doing.
Over time, there’s been an additional layering of different services. One of the key services we now offer is the adult day program. Again, this was down to a cohort of parents saying, “OK, we’re finishing up at Giant Steps, but now there’s not much out there for our kids.” The same thing happened with the Melbourne school. We had a group of families down in Melbourne saying, “We really need something,” and so we started a school there.
Another really important change came about because we noticed that there was a gap in accessing mental health care services for our cohort. Through discussion with parents, and our own experiences of trying to support students in doctors’ waiting rooms, we realised that parents didn’t have the opportunity to spend quality time with doctors, thinking through how they might get support. Most of the time their children were visiting doctors, they were acting out because they were beside themselves. As a result, there wasn’t a strong continuity of medical support. This is in line with a lot of research, which shows that people with a disability have less access to health services, particularly mental health services. Therefore, we established an on-site clinic, where a psychiatrist and paediatrician visit four to five times a term. The best part of this service is that the doctors get to see the students in situ. We present a whole raft of data and observations about the students, and all of us – the doctors, teachers, parents and any other relevant professionals – are in the room together. This is a unique opportunity. The doctors we work with love coming to Giant Steps because the quality of information we provide really helps them to make critical, well informed medical decisions. It’s a really important partnership.
You mentioned mental health. Is there a large overlap between autism and mental health issues?
It’s not so much an overlap; it’s more that the vulnerability to mental health issues is much greater in those on the spectrum. Certainly, the rate of mental health problems in our student body is far higher than the general population. That’s something that is not well recognized. Often when children or young adults with autism are having difficulties, it is attributed to their disability, rather than their mental health. That is something we need to work on. We know that some of our students experience anxiety, yet there’s almost no research around the way anxiety expresses itself in people who are non-verbal. Helen Appleton, our psychologist, is nearing the end of a doctorate focusing on that area – but it’s very difficult research to do because you’re working with people with complex needs, where there are no easy double-blind studies. That’s why it’s really important that we participate in research. A few weeks ago, we announced that we are partnering with Griffith University and Macquarie University, looking at a quality-of-life study for young children on the spectrum.
Did you notice increased anxiety among your students during COVID?
Yes. When all the known activities in their lives were suddenly withdrawn, we really saw a long-term impact. A significant number of students had no ability to understand why it was happening. COVID is a very abstract concept, so it was hard to explain to them. For many of our students, it was really a tough time because they were asking to go out to do certain activities, and they couldn’t understand why it wasn’t possible.
You often hear people say, “My kid is autistic” or “My kid is on the spectrum”. What can that mean – in other words, how wide is the range of autism?
The two things that form the basis of an ASD (Autism Spectrum Disorder) diagnosis are: first, that there are problems with social communication and interaction and, second, that there are restricted interests or repetitive behaviours. There’s a really wide range on the spectrum.
For some people, the level of social communication difficulty may be quite mild. They may have a great vocabulary, but they may struggle to understand how to communicate and interact effectively with friends and family. For others, it is a real struggle to understand what others are trying to communicate. When you’re unable to understand the social intention of others or even what’s happening within your environment, it’s a very scary and confronting place to be. When it comes to restrictive or repetitive behaviours, there is a real range again. For some people, these rigid behaviours and interests can be overwhelming.
Another thing that plays into the equation is the level of intellectual disability that can co-occur. So, you’ve got autism, which is on a spectrum, and then the intellectual disability, which is also on a spectrum. Most of the cohort that we have here at Giant Steps also have an intellectual disability, so that’s where you get such highly complex needs.
There is no cure for autism, but early intervention therapies have been shown to help. How important is it for parents to get in an early diagnosis and when should they seek a medical opinion?
Early diagnosis is very helpful, but often the journey to diagnosis takes time.
As for when parents should seek help, I think it’s important for parents to trust themselves when something doesn’t feel quite right. Or perhaps there are people close to the situation, with children of their own, who might suggest that it’s worthwhile to get a child checked out by a doctor. It’s great if you have a good relationship with your GP or if you have a good paediatrician. A paediatrician can make a diagnosis far earlier than you would otherwise be able to get on the standardized assessment. Community nurses are also very good at picking up the signs at the early childhood checks, so it’s good to take advice from them.
Unfortunately, a lot of these childhood checks haven’t been taking place over the past couple of years due to COVID, so a lot of diagnoses have been delayed. Then, when families have eventually got a diagnosis, they haven’t been able to access therapies because online therapies aren’t suitable for young children. Among the families with children starting kindergarten this year, there is a lot of frustration over how long it’s taken to get a diagnosis and find support. That’s been a real issue over the past two years.
Apart from the outbreak at your school in August 2021, did COVID-19 impact your services in other ways?
Yes. The government health orders meant that many activities we would usually do with students out in the community were impacted. The team were hugely creative in coming up with activities that we could do onsite, while still helping our students learn how to be successful in the community. It required a great deal of innovation and thinktank power.
Another problem was staff absenteeism. If our staff had any minor symptom, or they were a close contact, they had to stay home, which put huge pressure on staffing. We can’t just bring in casual staff, who don’t know the students, so it requires the whole team to come together and think about how we continue to provide quality services.
At the height of COVID, leading up to and after the outbreak, we operated in bubbles. People in different parts of the school didn’t see each other for months. We had an orchestrated system, where no staff other than myself ever crossed between those bubbles.
Unfortunately, the tale of COVID is continuing. Staff absenteeism is almost worse now than it was back then, due to all the other viruses going around. It’s about 50% higher than normal.
I know some of the Future Generation funds have been used to establish the Autism Training Hub in 2019, which allows you to deepen your impact by sharing your expertise. Can you please explain a bit about that and how its going?
The Training Hub came about because Giant Steps was regularly approached by schools, pre-schools, community groups, health professionals, respite workers and families to share our expertise in supporting autistic children and adults. We opened it in 2019, with the aim of equipping and supporting a range of professionals and parents working with autistic children in the wider community. COVID has had an impact on our ability to run some face-to-face training, but we were able to develop online training modules and training packages.
One of the great things to come out of the Training Hub is the relationships we’ve developed with other schools. We go out to support them in situ in their schools, and their staff come to our school to immerse themselves in our program. It has turned into a great partnership. I was walking through the classes recently, and one of our teachers said, “Oh, that would work really well for so-and-so.” I didn’t know any of our students by that name, but it turned out the teacher was talking about a student at another school, whose teacher had visited us. It is so nice to realise that our staff are thinking about other people in the community. It really deepens our impact.
Another area we are focused on is training professionals, particularly in the areas of speech therapy, music therapy and occupational therapy. There’s very little training that occurs within universities around autism and yet, with the NDIS and the significant number of individuals on the spectrum, a lot of money is directed towards that. There are lots of private practitioners working with our cohort who have never had any specific training in working with autistic children. So that’s where we’re seeing another impact.
A lot of your students have large NDIS packages, but these cannot be used towards their education. Is that right, in your view?
It’s tricky because there is a level of reasonableness to the premise that education should be funded as an educational expense. Our students have as much right to an education as anyone and so it makes things difficult if you suddenly blur the lines.
Bill Shorten [the new Minister for the NDIS and Government Services] said in one of his first interviews that we need to review the funding of special schools and also see whether there is enough support in the mainstream school system. The idea that the NDIS should not be used to replace the school system makes sense, but so does a review. When you break down the funding, the amount that individuals are receiving for respite on a per
Everyone thinks of Giant Steps as a school for children, but, as you say, you also provide adult services. Can you tell me a bit more about those?
One of the reasons we established the adult day program was that we had a number of students with complex needs, who had acquired lots of great skills through their schooling here. As they became adults, they couldn’t move into employment, but they still wanted to be able to use those skills. And, again, their parents found that there were no suitable programs in existence.
In addition to giving them a sense of productivity and purpose, the adult program offers a variety of activities. Their weekly schedule could include community-based experiences, relevant vocational skills, therapy sessions, behaviour support services and other activities that strengthen their communication skills.
We recently took over some old disused greenhouses on the Gladesville Hospital site, which a team of volunteers restored, and these are now part of the program. We always try to keep the program flexible so that we can find work programs that match the interests of our participants. For example, we have a fundraising Ball coming up and the gifts for those attending will be soaps made by our adult participants. If one of the participants has a particular interest, we try to support them in that and perhaps even help them to turn that interest into a little business. We had one young man with complex needs who really enjoyed lawn mowing. We helped him set up a business, whereby we did the edges and he did the mowing. He’s now mowing lawns three days a week. And so, rather than saying, “This is the program we offer,” we try to base it very much on the needs of the participants.
The adult day program is probably still seen as a small, bespoke service, but demand is really growing. I think the service will probably be as big as the school in about five years.
For more information, visit the Giant Steps website.