Rob Last’s 50 year legacy to the Australasian CHARGE syndrome community

By Mitchell Knightbridge, 2024

Rob utilised his unmatched charisma, patience and warmth to help hundreds of young children find their voice.

For almost 50 years, Rob Last has been an important figure in the field of education and advocacy for those with multi-sensory disabilities, deafness, deafblindness and CHARGE syndrome, along with their families. Driven by a passion for communication, Rob utilised his unmatched charisma, patience and warmth to help hundreds of young children find their voice.

‘It was all about getting them to find a form of communication that is meaningful to them, to share their thoughts, feelings, anxieties, their everything…I felt like anybody who had challenges with communication I could kind of go with it. We spot it and think “well how can we work around this for you”,’ he said.

Through his work creating and curating educational material, his decades-worth of presentations given at conferences around the world, and his position as a founder and long-time director of CHARGE Syndrome Australasia, Rob’s impact as a leader can not be understated. Endlessly humble, he would likely reject such a claim if presented to him. Instead, he bills himself as a teacher first and foremost. From the mid 60’s to his retirement in 2013, most of Rob’s work has been in the education and early intervention of children with deafblindness, including CHARGE syndrome.

Initially training to be a primary school teacher, a visit to the Glendonald School for the Deaf in Kew introduced him to a new focus. By the mid 60’s, he was teaching a small class of hearing-impaired prep-aged students at that same school. In 1969, he transferred to Monnington Special Education Centre, also located in Kew. This was an early intervention centre to which children and their families would be referred upon first diagnosis of a sensory impairment. Rob worked with a caseload of many families throughout the day.

‘When you're working in early intervention, you may first meet a kid when they are a few months old, then work with them until they start school. That’s 5 years. A lot can be established within a relationship in that time.’

Monnington employed an experiential learning approach. Rather than simply instructing in a formal classroom setting, Rob would work one-on-one with the kids to get to know what really engaged them most. Families were encouraged to be fluent in alternative forms of communication like sign language and use them at home as much as they could throughout the day. Just as anybody learns any language, the full immersion within this educational experience nurtures meaningful methods of natural, deliberate communication.

‘It’s not just for 1 hour a week or 10 minutes a day. You’re signing and communicating with them all the time, so that it becomes their mother tongue.’

Following an epidemic of Rubella, Monnington began to see children experiencing Congenital Rubella Syndrome. This causes a multitude of health issues, including multi-sensory disabilities like deafblindness. At the time, deafblindness was not a widely understood or accepted label. The kids were instead categorised under the deaf label, resulting in many of them passing through the early intervention program.

‘There was no venue for deafblind kids to go to. At the time we would think of it in the way of “are they blind and also deaf, or deaf and also blind?” It wasn't recognised how the dual disability would create its own specific challenges.’

At the time there was very limited knowledge on deafblindness, and also a lack of experts in Australia they could call on for advice. Through explorations of international research material on multi-sensory disabilities, Rob came across the work of Dutch academic Jan van Dijk.

Jan Van Dijk was a preeminent figure in the education and support of children with deafblindness. Through his years of research, writing, and assessments of children who are deafblind, he pioneered the development of many educational concepts and methods that helped families and professionals around the world offer better support for those children. He employed a philosophy centred on respect and understanding, and being mindful that every child, no matter their impairment, has potential that needs to be nurtured. Instead of seeing children with sensory impairments as having weaknesses that need to be fixed, they are instead seen as having strengths that need only be uncovered. Jan passed away in 2018. Though he is dearly missed by the community, his philosophy and impact still remains.

Impressed by his philosophy and knowledge, Rob travelled to the Netherlands to visit the school where Jan worked with deafblind children and young adults. Here, Rob saw the incredible work being done at the school and the two quickly became friends. After Rob returned to Australia, Jan joined him there to work at Monnington for a year. From here, they were able to ‘skill-up’ in their work because of the knowledge and practical philosophy they learnt from Jan van Dijk.

Rob deeply respected and trusted Van Dijk’s method, and continued to use it throughout his entire career. Another important part of this mindset was to trust the expertise and experience of the parents, and work from a relationship of mutual trust and respect.

‘They may not have specific knowledge on the nature of vision, hearing, and heart issues, but what they do know is the kid. They know their strengths and weaknesses,’ Rob said.

Even when his children would move on from home-based learning to a school or centre he didn’t work for, he would be called in at the parents’ request to act as a sort of consultant. This speaks volumes to the amount of faith families put into his work.

‘You connect with the family where they were at. You didn't impose on them what you reckon is best. You evaluate where they're at, their potential, and then work with them to achieve those aims. It was a collaboration where the parents are always considered the key voice in the equation, and we were just players in that game.’

Rob embraced a multi-modal approach to communication. This involved using a wide variety of different communication methods in order to work out which ones can present the most meaning to the child.

‘Visual, tactile, sign, spoken word, good use of hearing aids, drawings, mime - anything that could make sense, you use,’ Rob said.

‘That was entirely based on the kid. You have to really work out what works for that child. That’s why 1 to 1 work is so important. It gives you time to really explore what works.’

In his work, Rob employed the teachings of multiple disciplines in order to better understand the children he worked with. This includes a notion in the psychology field stating that all behaviour is communication in one form or another. Rather than trying to control a child’s behaviour, those behaviours are analysed in order to work out possible causes, messages, and courses of responsive action.

‘Maybe it’s destructive and angry, or withdrawn and passive…there’s always something there. What are the positives? Start from there. If a kid is just lying on the floor gazing at lights, then get on the floor and gaze at those lights with them. Let them know you're with them in their world.’

Rob later relocated to Sydney. In the mid 80’s, he began working at the Royal Institute for Deaf and Blind Children (RIDBC, NSW), known today as NextSense. Continuing with his early intervention and teaching work, he was soon introduced to kids with a little-known and sparsely researched condition called CHARGE syndrome. From here, it became a main focus. He began advising hospitals and requesting referrals of their children with CHARGE syndrome.

‘My style of teaching really suited those kids…they can get written off very easily as having not much of a future, whereas if you get to know them you can really see their potential and work on their talents. That makes it worthwhile for everybody.’

Continuing his clinical work, he built up a deep understanding of the needs and challenges of those children. He became a name many families and professionals trusted in regards to the treatment of CHARGE syndrome, as well as a leader in the community. In the late 80’s, he and a small group of parents of children with CHARGE syndrome began meeting informally at RIDBC. These meetings were the embryo that would eventually grow to become CHARGE Syndrome Australasia. He has acted as a board member and director ever since.

‘The CHARGE association group was my focus from then on. I was the only professional involved with the organisation at the start, then occasionally more would get involved as time went on.’

In 1993, the first American CHARGE syndrome conference took place in St. Louis, Missouri. At his boss’s insistence, he travelled there to give a presentation on the communication needs of kids with CHARGE syndrome. On his return to Sydney, he used a conference facility at RIDBC to set up the first CHARGE syndrome conference for Australia and New Zealand. In attendance were around 50-60 people. One of the speakers was Tim Hartshorne, an American Psychologist he had met in St Louis. Tim became a regular attendee of the Australasian conferences, and also a regular collaborator of Rob’s.

In the mid 90’s, Tim worked in the Institute’s academic department. He was somebody Rob could ask for advice. Tim helped him improve his ability to teach, understand, and support the kids that needed him. In addition, Tim ran the parent group conferences. As the parent of a child with CHARGE syndrome himself, Tim was able to lend that perspective and understanding. Tim was part of a wider worldwide network of academics, scholars, and professionals in the CHARGE syndrome field that could provide advice and collaboration.

Rob continued attending CHARGE syndrome conferences around the world, building a strong presence for the Australasian CHARGE syndrome and deafblindness educators’ community on the world stage. Rob has been an invited speaker at every American CHARGE syndrome conference since his first presentation in St Louis. In all those years, he missed only a single conference due to illness. Soon after beginning his conference career and establishing CHARGE Syndrome Australasia in 1993, he began production on a long-term documentary.

For his first CHARGE syndrome conference in St Louis, his presentation included videos filmed with several Australian children with CHARGE syndrome. Inspired by (or, as he described it, ‘openly pinched from’) the British documentary series 7 Up, he then revisited these children at 7 year intervals between 1993 and 2007. Through interviews and documentation of their lives, the film exhibits the skills, challenges, and education of those kids as they grow up through the years. A self-produced passion project, the film required Rob to travel around the country and teach himself the art of filmmaking and editing.

‘I did it mostly with my own money, my own camera, and my own computer. I learnt to do my own ragtag editing and made what I think is a pretty good little film. I get feedback occasionally from people telling me they used it in their educational program with young teachers in Germany or somewhere.’

The film is just another piece of Rob’s long history with the CHARGE syndrome and deafblind communities and raising awareness globally. In 2014, he was invited to give a talk at that year’s European CHARGE syndrome conference in Germany. While there, he showcased the film and promoted “Why am I me?”, a children’s book published by CHARGE Syndrome Australasia. His presentation garnered wide positive attention, resulting in the book being translated to German.

‘I can’t take credit for that. It’s the parents who did it. They’re amazing. How they find the energy I have no idea.’

In 2018, Rob received a general division Order of Australia award as recognition for all his service to those communities. Endlessly humble, Rob prefers to focus on his work without the song and dance of awards. When asked about the award, he rolled his eyes with a smile and a chuckle.

‘I mean…I was pleased of course. Very lovely thing to have happened. I just wish my mum and dad were still around to have seen it. We were from a working class background, and for me to have reached that achievement was really something,’ he said.

When the pioneering nature of his work was pointed out to him, he responded, “I’ve never thought about it before. We were just doing it and working it out as we went.”

Now, almost a decade into his retirement, he sees the current community of educators and fears they may be losing track of the philosophy he held so dearly in his work.

‘When I go to conferences, I hear professionals wanting to take control of families and the child. Wanting to teach them, instead of working with them to achieve something. I think breaking through that barrier is really hard because professionals feel that if they are just observing a child play, they aren't doing anything. When, really, they are doing the most important thing, which is to pay attention to what the child is doing and can do. Taking note of what they are seeing so they can use it in the future. You don't need to show off your skills. It’s ok. You can just observe as best you can.’

This reflects a philosophy that he hopes all people can embrace - one based on understanding, and faith in the potential of all people.

‘Follow the child’s lead. Embrace diversity. These kids so often get stuck with the ‘disabled’ label. People see them as difficult or damaged. I always just treat them as another person, who also has whatever they have. Because that’s how it is with all of us. Whatever you come with, that’s who you are. People don't notice the potential of these kids. You really have to believe they can do whatever they can and will achieve, so that they can then reach that potential. The range of potential for all kids is huge. Some will end up doing multi-degrees, and some will have factory jobs. And it’s the same for kids with CHARGE syndrome. You need to know that they have abilities, not disabilities.’

Robert Last AM (Board Director 1994-2024) Early Childhood Educator (ret’d)