A team that understands him: Leo's story: deaf and autistic

The situation before Myxa

Leo is in his twenties. He is profoundly deaf and has an intellectual disability, autism and a vision impairment, all stemming from a condition he was born with. He does not speak. He understands the world through what he can see and touch, and he communicates with a small set of signs, pictures and gestures with people who know him well. He grew up with his mum, and she is still the most important person in his life. By his late teens, the level of support he needed, two people with him around the clock, was more than one parent could sustain, and he moved into funded accommodation.

Leo started with Myxa through the NDIS complex needs pathway. He had been approved for a Robust Specialist Disability Accommodation (SDA) home, but no suitable property existed yet. Myxa supported him in an interim home in central Victoria while funding was finalised and the house was built, a wait that ran to more than a year.

Leo's behaviours of concern include absconding, kicking, pushing and slapping, and urinating and defecating in public. Earlier assessments had found he was excluded from almost every community activity because of them. Without a way to understand what was coming next or to tell people what he needed, his behaviours were how he communicated.

What Leo wanted to change

Leo cannot tell people his goals in words. His mum, who is his decision-maker, and the people who know him best understand them from what he chooses when he is given a real choice, and from what his assessments have said for years. Leo wants to be out in the community more, in open spaces rather than busy ones. He wants meaningful things to do. He wants to see his mum regularly, and to live close enough to make that easy. He wants to be safe at home and more independent in his own daily routine. And he wants to be supported by people who understand what he is communicating the first time.

The support plan and transition

Leo's support was built on two things: consistency and learning. His assessments had said it plainly: how he presents on any given day depends on how he is supported, and inconsistency between workers is one of his biggest triggers. So workers were matched to Leo and kept on his shifts. Every one of them was trained in his Behaviour Support Plan and his communication system before their first shift, and kept learning as both of those changed.

His Behaviour Support Plan is built around what settles him and what unsettles him. Running water and showers calm him, so they are part of his day on purpose rather than used as a reward. Deep pressure and touch calm him. Open space, bush and movement calm him, while busy, visually cluttered places overwhelm him, so his home is kept visually simple and his outings favour quiet places. Food, pain he cannot report, and boredom are his known triggers, and the plan treats each of them as something to get ahead of.

Leo has 2:1 support through the day, with active overnight support. Two workers on a shift means two defined roles. One worker is with Leo, communicating with him, guiding his routine and watching for the early signs that he is unsettled. The other prepares what comes next, manages the environment and the risks in it, and steps in if Leo responds better to them in that moment. The roles swap through the day, but at any point both workers know which one they hold.

The home itself was also part of the plan. Leo's Robust SDA home was built for him, close to his mum, with the layout and fittings specified around his support needs, so the environment does some of the work rather than leaving all of it to the team.

Communication that changes every fortnight

Because Leo is deaf, the most important work in his home is visual. His speech pathologist leads this work, and it keeps changing. His communication plan is reviewed and changed every fortnight, and his visual supports are updated with it.

At the centre of it is his communication board. His whole day is laid out on it as a visual story, step by step, and it is rebuilt every day. At any moment, Leo can walk over to the board and see where he is up to, what has been done and what comes next. He does not have to guess, and he does not have to wait for someone to tell him in a way he can take in. If an activity changes, the board changes first, so the day he sees is the day he is going to have.

Around the board sit the sensory supports from his occupational therapist and the strategies from his Behaviour Support Plan. Together, they mean the team is not simply managing Leo's behaviour. They are giving him the information and regulation he needs, so his behaviours have less reason to happen.

How the team worked together

A plan that changes every fortnight only works if everyone can keep up with it. Myxa's House Supervisor holds the plan in the home and makes sure every shift is working from the current version. Rostering keeps the same team on Leo's shifts and gives notice when someone new is coming, so induction happens first. Myxa's training team runs Behaviour Support Plan and communication sessions and repeats them as the plan changes. Support workers record what happened, what they tried and what worked, and that information goes back to his behaviour support practitioner and speech pathologist to shape the next fortnight.

Leo has regulated restrictive practices in place: chemical restraint and environmental restraint. Each is authorised, implemented exactly as his Behaviour Support Plan sets out, reported as required, and reviewed by Myxa's Authorised Program Officer with his behaviour support practitioner, with the aim of reducing them over time. The team's records of when they are used, and what was tried first, feed into that review.

Outside Myxa, Leo's care team meets regularly, and every decision about his support is made together rather than by one service alone. His mum is there as his decision-maker and the person who knows him best. His NDIS complex needs planner looks after funding and the arrangement as a whole, and his specialist support coordinator holds the plan together across services. His occupational therapist advises on his sensory needs, home environment and routines. His behaviour support practitioner holds his Behaviour Support Plan and leads the restrictive practice review, and his speech pathologist builds his visual communication and trains the team in it. Myxa's House Supervisor, SIL Manager and Authorised Program Officer bring what the team is seeing day to day.

The clinical work is a loop, not a handover. The speech pathologist builds Leo's visual communication and trains the team in it. The occupational therapist sets the sensory recommendations that run through his day and his activities. The behaviour support practitioner holds the Behaviour Support Plan and reviews what the team is seeing. Each of them changes what they do based on what the others find, and Leo's support workers are the connection between them, because they are the ones with Leo every day. Myxa's role is to work alongside them and help implement their plans consistently, every day.

The outcome

Leo now lives in his own Robust SDA home in regional Victoria, close to his mum. He has started a veggie garden, which matters because one of the things his assessments said he needed years ago was a productive role, something that was his. He goes out for barbecue lunches, swims and uses the spa, plays basketball and goes walking, with his sensory and behaviour support strategies built into each of those activities. A few years ago, his team could not name a single community activity he could safely take part in.

When Leo's planner started to feel repetitive, the team added variety and choice so he wouldn't get bored, and that is now part of how the fortnightly review works.

Leo's behaviours of concern have not disappeared. But he can walk to his board at any point in the day and see what is happening, the people around him understand him and keep adjusting as he changes, and his world has become bigger, not smaller.

Related Myxa support

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