Peter Wilson understands what it’s like to live with a life-changing disability. He also knows about the power of having fun when you have a disability.
Peter conceptualised Determined2 as a way of getting people with disability underwater… and watched in amazement as their enjoyment turned into major health benefits and improvements in their day-to-day lives.
He talks about the power of water and his non-negotiables that put people with disability at the very centre of Determined2.
In 2007, when I was 27 years old, I was involved in a serious workplace accident. Witnesses on the scene thought I was dead. When I arrived at the emergency room and they were prepping me for surgery, they told my wife to say goodbye to me.
When I survived, I was in critical care for about two weeks with only a 20 per cent chance of survival, and I still had people visiting to say goodbye. Our son was five and our daughter was 18 months old, and they came in to say goodbye.
But then, when I didn’t die, they said I wouldn’t walk again, or I’d be permanently disabled. All up it was three months that I couldn’t move, I had to lie flat while my pelvis and spine healed. I transitioned to rehab and then to home with support from the Royal District Nursing Service and my amazing wife. It took about a year to get back to standing up.
Mine is a workplace injury, so I continue to be supported by ReturnToWorkSA (formerly WorkCover) and now claims like mine, which are catastrophic in nature, are managed through a team called Enable. My supports now are very similar to an NDIS participant. But it wasn’t always like it is now.
I thought I’d be able to go back to work, but returning to the motor industry didn’t go that well. By 2015 I was in a severe, depressed state. My biggest challenges were mental. With WorkCover, I had no choice and control, all the power sat with the insurer. I was in a pretty dark place, and that was the turning point for me.
I’d started scuba diving after my accident and it was difficult for me to get involved in, specifically around the medical requirements. But I found it beneficial in a bunch of ways and I wondered if I could use it to help people with injuries like me. There was no one else doing it, which meant I didn’t need a uni degree to do it – I left school in Year 9. Then ReturnToWorkSA was able to support me as I went about setting up Determined2.
We found people injured at work weren’t that interested in accessing the program, but people with disability were. And I’d never met someone with disability – even though I am a person with a disability! We were doing callouts and I rang my Occupational Therapist (OT), who connected me with people. I asked for someone who had significant disabilities, someone who would challenge our program, the doctors and our design, because if we can make it work for them, we can make it work for anyone.
And that’s how we met Ben. The same day I’d called my OT, he’d rolled up to one of the staff in the Hampstead Rehabilitation Centre and said: “Do you know anyone who could help get me back in the water?”.
Ben changed my whole world. I’d lived in this bubble of workers’ compensation, and I felt so sorry for myself. Ben was this kid who was 20 years old, a quadriplegic, who would go on to live in his own home, no partner, no kids… and he was so happy. So bright. His footy club had done fundraising for him to get a wheelchair. This was 2015 – he inspired me to look at my own situation.
It took us three months to get there, to get the insurance in place and the doctors in place. Initially, no pool would let us in, but we found one that would let us use it when everyone else had gone home.
The night we first tried what would become immersion therapy was Ben’s 21st birthday. When Ben got out, he was glowing. There were 20 people in the room, all crying. I said: “This is what I’ve got to do.”. It’s why I survived.
And from there we got to work, and then very quickly won the National Disability Award from the Commonwealth Government. One second this was a scribble in a book, then six months later we were in Canberra with the Prime Minister at an awards night… and we won. That opened the door and people started enquiring – people with more challenges than Ben.
It will always be about having fun. I don’t believe therapy has to be boring or vanilla!
In the beginning we had people around us, including doctors with underwater medicine specialities overseeing the medical part of what we were doing. The people in the pool were dive instructors or professional divers. Everyone was safe. Everyone was having fun. Participants were talking about a sense of freedom and confidence. And then people started getting better. More mobility, increased flexibility, happier and healthier – all things that any health service should be doing.
That’s when we first asked the question: “Could this actually be a therapy?”.
One of our team members came up with the name immersion therapy. He was the second person to go in the pool, Paralympic gold medallist Tim Maloney OAM. He’s now on our advisory committee.
Anyway, we were always careful not to position ourselves as therapists – while we had underwater medicine doctors involved, we weren’t therapists.
We had to investigate our hunch, whether immersion therapy could actually be a therapy. We were pretty sure it was – that’s what our participants were telling us.
Of course, research needs funding dollars, so along with ReturnToWorkSA, we also had the Lifetime Support Authority (LSA) as one of the first funding bodies to endorse and fund our service. The LSA supports people who’ve been seriously injured in road accidents.
Through the LSA we applied for a research grant and our doctors connected the University of South Australia (UniSA) and an exercise physiologist, Karlee, looking to do her Masters by research and she investigated: “Could this be therapy?”. You can find her thesis here.
Parallel to that, there was a qualitative study, which included about 60 participants and their support workers and families. I really liked the idea of this research because I always believed what was missing in my recovery was my voice, and so hearing from the participants about what they thought immersion therapy was really gave the whole picture of what was going on underwater.
The qualitative research was really cool, because the researchers thought the biggest benefit of immersion therapy would be the physically obvious – the ability to move underwater, for people who find it difficult to move on land. But the largest consistent theme was an improvement in their mental health and self confidence. Their physical improvement was, in most cases, a pleasant byproduct of doing something they enjoyed.
Now, as part of our seven-year relationship with UniSA, we’re entering the next phase of research with clinical trials. We continue to put forward Honours research projects each year and we currently have five underway, which is awesome because we get to include students in our work and, in return, they bring fresh eyes and ideas to the table to make what we do even better!
Where we’ve evolved to is incredible, and I am very proud of where the service is today.
Once we realised the potential, we knew that we couldn’t deliver it any more – as divers. Instead, we recruited allied health professionals with no scuba experience, and trained them under the expertise of diving doctors, along with the model and standards we had developed during the previous four years to deliver the service.
We had to check – did therapists suck the psychosocial fun out of the activity and turn it clinical? I honestly thought they would, it was one of my greatest fears taking this step.
But we found no, not only could you retain the fun, but we could dramatically increase the physical outputs for participants, now that the people delivering the program were allied health professionals who understood how to maximise those physical benefits.
The mounting evidence is pointing towards immersion therapy being a truly evidenced-based biopsychosocial therapy that nearly anyone can do. It can support your body, your mind, and how you see yourself – it's truly holistic. It doesn’t matter if you live with a profound disability or a back injury, you can do immersion therapy.
We’re all equal under the surface of the water.
People that have restrictions with mobility talk about how under the water they are free. There’s no worry about falling over because the whole body is supported – unlike hydrotherapy, which is partial support. With immersion therapy you have an air supply, so you don’t need to know how to swim.
People with communication challenges find under the water it’s just calm. People with Tourette’s and tics find they disappear under the water. People with chronic pain are pain-free under the water.
Immersion therapy is like the fourth dimension. It’s a totally new environment.
The first is people think it’s just scuba diving in a pool – that’s false. We use some common scuba equipment, as well as modified equipment we’ve developed with our doctors, so people have access to air while being fully immersed.
The other misconception is people think they couldn’t do it, it’s beyond their capabilities, you need to be wild and adventurous. Not true. We have people who need support 24/7 and we can support them in the water. We have people who are petrified of water – including a man who nearly drowned when he was 10 and had to be resuscitated, so he never went in the water again. He acquired a disability and, after a long time, he tried immersion therapy and now he’s gone to snorkelling independently and he’s going to Fiji.
Our participants include children with autism, right through to elderly people post-stroke, a broad spectrum of people.
We had to build a business model that was trainable, scalable, and repeatable, assessed to be appropriate and backed by research. We know the service is life changing and we wanted the most efficient way to get it to people.
Since 2015 we have had one simple vision – immersion therapy for all – and that vision is about to become a reality.
About three years ago we started conversations with potential partners and their first question was always about the return on investment and commercial terms. These conversations didn’t last long.
Dr Jeff Walkley from Belgravia Leisure had a different question: “How does immersion therapy help people?”. We know they’ll be an organisation that can rise to the occasion and meet our values, and they have the resources and capability to deliver. We are excited to see where they can take immersion therapy.
Put lived experience at the centre. Make sure you have people with disability in your company. There’s the great saying ‘nothing about us without us’. That’s not about getting a bunch of people with disability, taking their advice and not paying them, because that’s not co-design. Include people with disability, not just in the advice, but in the company in key roles.
Make sure you are being safe. Make sure you have insurance for what you are doing. Make sure you have the qualifications – or bring qualified people in. Doing something like this takes a lot of resources and commitment, so be ready for the long haul. It takes hard work and a bit of luck, and I think we have had the right combination of both.
If you are a person with disability, look into supports like micro-enterprise, there are lots of new and excellent way to support people with lived experience to set up and run their own gig. Don’t stress about the things you might not be good at or find hard to do, it is about having the right people around you to bring your vision and passion to life.
Ask for the person’s qualifications, registration, and insurance – then look at the testimony. Do it in that order. “How long have you been doing this?”. “What are your qualifications?”. “What is your insurance?”. “How have you helped other people?”. If you are happy with the answers, go and have a look and don’t be afraid to go slowly.
We have some people in our service who take nine sessions before they get in the water for the first time. It’s about your choice and your control.
Yes, I’d encourage you to push yourself, but you should feel the provider has the flexibility to hear you, see you, understand you, and know your limits and not take you beyond them.
We can adapt our service to meet almost any goal. You’re the expert and we’ll work it out with you. If you have funding for Improved Daily Living, or any allied health, you can choose to do our service. We are also registered with ReturnToWorkSA, LSA, and the Department of Veterans’ Affairs. We’ve even had people access our services under their aged care package, and we also support people without funding through a pro bono program.
We also provide land-based exercise physiology and hydrotherapy programs for people who feel going underwater might be a step too far out of their comfort zone. And we are based in a community aquatic centre, so it can be a really easy transition to mainstream programs for our participants looking to make that transition.
For immersion therapy, the process is booking a meet and greet online, calling, or shooting us an email – you can leave your bathers at home for this! Come and have a chat and a look, then get checked over by one of our doctors. There are a few medical exclusions, but not many. And if you’re safe and happy, we can start. Anyone can take that journey with us.
I can’t choose, there are too many. We’ve delivered 10,000 sessions of immersion therapy, and in partnership with Belgravia Leisure, we’re going to deliver 36,000 sessions a year in five years.
The thing I love most, hands down, about Determined2 is our sense of community. It’s my most favourite, no matter what else is going on.
We’ve been so fortunate to have been supported by a huge community of people – too many to name – but our staff, the students who do placements with us, our team of expert doctors, the research team at UniSA, and my own family, my personal mentors, coaches and supporters. And, of course, the hundreds of participants who have gone underwater with us.
I feel truly blessed to be part of something this special.
Alison Climo is relatively new to the disability sector, joining Sunnyhaven Disability Services in late 2022 after working in the aged care sector for 10 years. She shares with us what makes day programs a great option for adults with disability, how to handle challenges, and tips for finding the perfect day program for you.
We offer day programs for adults with disability across two locations in Sydney and we offer a great mix of things to do where clients get something fun and engaging to choose from every day.
Our choices are always flexible and, at the moment, we’re offering a mix of art and music therapy, sports and outdoor activities, cooking and nutrition, as well as having fun, like going to the movies.
Everyone arrives at the centre, excited to see which staff member they’ve been linked with. They look for their picture and see who their staff member is.
Then, we do morning tea, then it’s time for different activities. It could be swimming, going to see a movie, going to the park, music or art – it depends on what they want to do for the day.
We have a lovely outdoor area, so when everyone returns, often some people will go out and play soccer and hang around with friends, while other people might come in and do art, or just relax and chat.
We really try and create a home-away-from-home environment where people feel comfortable to be exactly who they are. That means people are free to choose to stay in the centre if they want to – today, we had people going out on buses, but one person didn’t want to go, and then we ended up having a few people staying back.
It means that, as an organisation, we need to be really flexible and responsive to people’s needs, but that’s our job and we’re glad to be able to do that.
I’d been working in aged care for close to a decade and I had always wanted to work in disability.
I was diagnosed with cancer two years ago and I took two years off work to fight it. Then this job opportunity came up and my friend said: ‘You need to go for it - get out of your comfort zone and give it a go.’, and I’m so glad that I did. I absolutely love it.
The best thing is knowing that you’re making a positive difference in someone’s life, it’s just incredible.
I love witnessing our clients grow and develop, especially the social side and the friendships, watching people establish a community and connections outside of their own family.
I would say finding the right staff can be challenging because it’s so important. You need to find the right staff to work with the clients to do the things that clients want to do.
It’s also about working to support client choices – I’ll allocate staff to certain clients but then the client will want to work with a different staff member or do a different activity. We need the right staff who understand our clients’ different behaviours and needs and how to best support them.
We work alongside people with physical and intellectual disability, so we have staff who need to have qualifications in supporting people with behaviour management plans, manual handling plans, and the list goes on.
Our commitment to flexibility does make our work challenging but it’s a great challenge to have.
For a new plan, speak to a planner or your local area coordinator, set some goals in place that you want to achieve, and perhaps speak to a plan manager or support coordinator for help in finding some programs to choose from. Then you can find day programs that might align with your goals and the program can help you achieve those goals.
Some goals that our clients have that align with what we offer in Sunnyhaven’s day programs include hydrotherapy and learning to use their own money – so, paying for things and getting receipts. Others want to learn to read and write, and we even had a client who wanted to lose weight and improve their health. She has been able to lose five kilograms in the past three months and she is so excited – so are we to see someone set a goal and achieve that goal! She’s achieved it through lots of hard work and willpower.
Look at the day program’s activities, see what they are doing, and see what mix of in-house versus outward activities they’re doing.
The way we’re careful with our clients’ budgets is to draw on the skills of our staff – for example, we have a staff member who’s really skilled at soccer, so we’re starting a soccer group. We’ll take our own goals, shirts and other equipment to a local park and start our own league.
We’ll match staff who enjoy fishing with clients who want to fish – that way, it’s a lower cost, rather than chartering a fishing boat every time! And we’ll engage staff who are passionate about cooking to lead our cooking and nutrition programs.
Having said that, we’ll bring in professionals when we need to as well, for example with music therapy.
Another way that day programs can help with stretching your plan funding is with increased participant to staff ratios. If it’s suitable for you, having two or three participants working with one staff member, rather than 1:1, can be a way to stretch your budget if it suits your needs and level of support.
When you say you work in day programs, I think a lot of people assume it’s all just fun times and easy work, but it’s not. It takes a lot of work and dedication to support someone with disability, get to know and understand what motivates them, and continuously work to find new and engaging activities that align with their goals.
That’s not to say we don’t have fun – we really do, and I love my work – but there’s a huge level of responsibility. We’re caring for people’s children, their family members, we’re responsible for their safety and their path to their goals.
We also work with clients at the high points and the low points of their lives, and that can be really hard. To do this job well you have to be empathetic and so it’s only natural that we feel sadness when they are sad, missing their family or grieving someone they love.
Give it a go, sometimes you have to push yourself and get outside of your comfort zone. You have your training to fall back on, but once you start working alongside clients, you’ll really understand the highs and lows of working in the sector – but you don’t know what you’re capable of until you try it.
I find that once staff are working in day programs they don’t want to leave! Our program is really personal, and we get to spend a lot of time with clients – we form our own little community. And, best of all, we get to witness our clients grow and develop in confidence and independence – it’s the most rewarding job in the world!
I’m a grandmother and I love spending time with my family, my children and grandkids. I’m also a bit of a nerd, I love playing video games a lot!
How we talk about disability matters, because it creates a frame of reference through which we and others see it.
A positive frame of reference can remove the walls that have boxed people with disability into one narrative and instead create limitless possibilities.
And having a vocabulary that can express and convey our thoughts and ideas about disability better has the power to do that - times 10!
That’s why we like these 10 buzzwords that are levelling up the disability narrative and creating a world that’s more inclusive through better expression.
Ableism is discrimination against people with disability. We like to believe that people who are ableist are in the minority and on the decline, thanks to more education, more inclusivity, and more positive representation of disability – but there’s still a way to go, especially in the workforce.
In situ: We will not tolerate ableism in this community.
Also known as nypical, this word refers to all non-autistic people – including neurotypicals and non-autistic neurodivergent people.
In situ: I am allistic.
When a person has autism and ADHD combined. This is a relatively new word because, before circa 2013, the concept of a person being diagnosed with both wasn’t recognised in the mainstream system.
In situ: James had AuDHD as a child, but at the time it wasn't recognised.
Being proud of who you are and embracing your disability. It can also mean feeling confident and not hiding it.
In situ: July is Disability Pride Month.
A person with a learning diverse-ability finds learning more difficult, which doesn’t make them less able, they may just need a little extra support in the area where they have it.
In situ: I have a reading diverse-ability called dyslexia.
Recognises that different identity traits like ‘woman’ and ‘disability’ don’t exist independently and can mesh to impact them and shape their experiences. For example, a cisgender, black, disabled student and a queer, white, disabled student may have very different experiences of disability discrimination because of the multiple identities they carry.
In situ: How can intersectionality help us understand diverse experiences?
Where people conceal certain traits and replace them with neurotypical ones to avoid being recognised as neurominorities – e.g., by changing tone of voice, body language, eye contact, speech patterns etc, to match the dominant social norm and avoid negative consequences.
In situ: She masked her disability.
A blanket word for ways of thinking or experiencing the world that are different from what’s considered ‘typical’. Everyone’s brain works differently and therefore people think and experience the world differently too. A person on the autism spectrum, or someone with ADHD, dyspraxia, Tourette Syndrome, and other diagnoses may identify as neurodivergent.
In situ: A report claims that approximately 20 per cent of high school students in Australia are neurodivergent.
A different word for neurodivergent – and one we've only just heard about ourselves!
In situ: I’m a neurospicy writer.
Person-first language emphasises that the diagnosis doesn’t define the person, but the person has the diagnosis (i.e. a person with autism).
Identity-first language emphasises the idea that the condition is inseparable from the person (i.e. autistic person, disabled person, blind person).
In situ: We strive to use person-first language when we talk about disability.
Every person has the right to make decisions for themselves, and to take risks that help them to learn, grow, and experience life at its fullest. And for people with disability, it’s no different.
That’s why it’s important they and their loved ones know about ‘dignity of risk’ – the right of every person to, within their capacity, make the choices they want, even if they involve some level of risk.
Dignity of risk is a basic human right. Examples might include:
Where dignity of risk can get complicated is when it is balanced with duty of care – the legal responsibility to keep a person and their property safe. For example, a support worker assisting a person living in disability accommodation should honour the person’s decision to walk outside alone, even if it may be a risk to their safety.
Duty of care also means having systems in place to help reduce risk, but not at the cost of a person’s right to choose for themselves.
An example of this is, if a healthcare provider recommends a patient (who may be a person with disability) stops consuming alcohol, but the person instead decides to only reduce their intake, those who provide support to the person can check in regularly to see how they’re going with minimising their consumption.
It’s less about removing risk and more about helping someone do what they want in a safer way.
With dignity of risk, you have the right to make decisions about your life, and your support networks – family members, providers and others – should respect them, even if they don’t agree with them.
Irshad Haidari has been working alongside people with disability since beginning a traineeship in 2019. Trusted to work with very vulnerable National Disability Insurance Scheme (NDIS) participants in Supported Independent Living (SIL), Irshad was awarded Trainee of the Year in the 2021 South Australian Training Awards, delivered by the Government of South Australia.
However, it’s not the awards or accolades that mean the most, he says – the most rewarding part of being a support worker is the professional relationships with participants and their families.
Like a lot of people in our industry, I had a personal connection to someone with disability. Growing up in Pakistan, one of my friends had significant intellectual and physical disabilities. Unlike Australia, he didn’t receive financial support from the government – he was just surviving day to day as people passed by, helping him with cash.
When we arrived in Australia, I got work as a baker, but I knew I wanted to do something with people, something more fulfilling. The traineeship was a fantastic opportunity and then, as part of my traineeship, I got work with Cara in South Australia and I’ve been with them ever since.
I can’t imagine ever leaving the disability sector.
This job is the most rewarding job there is. As support workers, we get the unique opportunity to make a positive difference in the lives of people with disability. You develop meaningful and lasting professional relationships with customers, and you experience a feeling of genuine accomplishment as customers get to improve their quality of life.
As support workers, we also work every day as advocates for our customers. There will be times when we head off to a restaurant and the staff will talk to us instead of the customer, especially if the people we’re supporting are non-verbal. We can gently educate staff – you can say ‘how about you talk to the customer’, or you can ask them to show the customer the menu and they’ll indicate their choice with eye-gaze or with their finger. In this way, as support workers, we ensure our customers are valued and included.
Being a support worker requires a lot of physical, emotional, and mental fortitude. It requires a great deal of patience and empathy.
Sometimes it can be challenging to manage people’s behaviour when it’s impacted by their physical or cognitive disability. Or there can be medical emergencies to deal with, where you also need to manage your customer’s comfort and safety.
As support workers, it’s important we also take time to look after our own health as well – you need to fill your own tank, so there is more energy to give. You need to rest and look after yourself physically and mentally. Despite the challenges, the meaningful impact we have for our customers is immeasurable to us.
It takes time to form good working relationships. We need to be able to trust each other and give each other time and space so that the support worker can get to know and understand the customer. You cannot expect a support worker to understand a customer and their family in a single shift.
The longer support workers work with you, the more they will get to understand what you want, how you feel, what your thoughts are, how to understand and prioritise your choices, and how to engage with the community.
With time and trust you can empower customers and support workers to have good working relationships and for support workers to provide quality support.
If you have patience and the desire to make a change, then it’s the right pathway for you. It’s about helping others and supporting someone because it’s the right thing to do, not just because it’s part of a job.
You need to support your customer’s choices, prioritise their life, and advocate for them. It’s about what they want, not what you think is best.
To people who are looking for a rewarding job, I would say this is the best of all professions for job satisfaction.
Educate yourself about people with disability – consume media from people with disability, read stories by people with disability, find their art, and educate yourself about disability pride and the rights of people with disability.
The physical part of safely supporting clients, manual handling, is something that helped me a lot and I’m always looking to learn more and deepen my understanding.
At some recent manual handling refresher training, the facilitator asked me to act as the customer. I was on the floor and the trainer put a sling around me and transferred me from the floor to the bed. I felt how vulnerable it is to be on the floor and relying on people who you don’t know. It’s so scary, you get the feeling you’ll fall down, the risk of harming yourself and others. Some people with disability keep that fear, and inner feelings, inside them.
It really reaffirmed the importance of reassuring people, while we’re doing transfers especially, supporting them emotionally and helping them to feel safe.
Something surprising about the profession is the significant emotional attachments that can form. In many cases, support workers spend considerable amounts of time with customers and form meaningful relationships, which lead to a sense of pride and fulfilment.
And that’s why it’s so important to maintain professional boundaries. We have to strive for a balance of compassion and professionalism. We aren’t our customers’ friends or family, we are professionals there to work, and we never take the place of friends and family.
It’s about getting to know the customers little by little.
Don’t expect that everything is written in the care plan. The care plan gives you the health needs, but working with customers gives you the understanding of what they want and how they want to be supported. These are things that you can only learn while working alongside a customer.
You can't get all the skills in just one day, you have to have that desire to learn, have compassion, and get to know the people you’re supporting.
One of the most interesting things that we both enjoy is painting on a canvas. I think it’s the colours that really engage them more with the activity.
We put some soft music on in the background, the customers choose the colours, and we support them with the painting with hand-over-hand. You can see the focus on their face, their focus is on the canvas and how the colours spread out as they are holding the brush.
We also use a lot of sensory toys. There are toys where you can record your voice and make your voice or their voice and make games out of it – the occupational therapist and the speech pathologist have used them.
If a client can’t talk, we can use their device to communicate and you can record words, a sentence, a joke, a command or request. I enjoy what the customers enjoy!
Out of the house, there are so many places to go! One of the women I support loves bowling. We encourage and cheer and we make it into a competition. Another loves shopping, even window shopping. When we go into the city and are surrounded by people, she loves the energy of the crowds. Or we’ll go into shops and help her choose dresses and nail polish.
Going to the pool is another thing. While sometimes it can be challenging with noise, swimming has made such a positive impact on their bodies and their lives. You can see how it helps them to stretch out, and afterwards you can see how relaxed they are as they go home ready for a nap.
Last year I went back to Pakistan and got married! I spent three months there, but it was so short – I’m going back again this year. My brother also got married at the same time, so my whole family was there. We had such a great time.
Now, my wife is sharing my day-to-day – my problems or stresses, and my excitement. I can tell her anything and it eases my mind. We have started the immigration process for her to move to South Australia, but it takes time.
I still do a bit of hip-hop dancing, but less these days because I spend more time talking to my partner and planning our life ahead.
I still remember the night of the award ceremony, sitting in the crowd after we had all received our finalist certificates. I thought, ‘we made it here, it’s a great achievement’. There were so many good candidates in the room, I thought I didn’t have a chance.
Then, when they announced my name, my heart went from the ground to the roof! It will be one of the best memories of my life.
Since then, I’ve had many people approach me for advice about working in the disability sector. People listen to you and take advice from you, which is a great thing. Now I’ve got four years’ experience in the industry, as well as my traineeship and the award, and it gives more words to the people around me.
I’ve convinced my brother to get into the disability sector as well. He did a traineeship and he is working for another provider. I’m like a one-man recruitment agency for the disability sector!
I’m studying my Diploma of Community Services, and in the future I would like to work in more leadership roles, but I don’t want to completely stop working on the floor as a support worker, I want to do a few shifts every fortnight supporting customers.
There’s wide scope in this course with what you can do – you can be a case manager, you can be a service manager, an advocate, or you can even become a support coordinator.
I do see myself in a leadership role, but I don’t know where. But I’m sticking with working in the disability industry, for sure. It’s the most rewarding sector in the world and I always want to be able to be an advocate for people with disability.
If you’re anything like most of us, chances are you regularly turn to the National Disability Insurance Scheme (NDIS) website as a source of truth for all things funding (and beyond!). But what happens when the theory on the page doesn’t match the practice in your life – where do you turn to then?
Take goal setting for example. The NDIS website says: ‘Your goals are not directly linked to your NDIS funding’ – but those with lived experience tell us that getting your goals right can play a big part in securing more money for supports, while getting them wrong can leave you grasping for funding and seeking a plan review pretty quickly.
We chatted to *Kate, a sibling of an NDIS participant, and Elizabeth Hickey, an independent support coordinator and mentor for people in the disability sector, about identifying and articulating well crafted goals that tie directly to the funding you need to deliver the outcomes you’re after.
Kate told us that at the start of her brother's NDIS journey, he and his family didn’t really know what goals were for or how to set them. This meant he wasn’t telling the National Disability Insurance Agency (NDIA) what he wanted out of life, or the things he really needed, and therefore he wasn’t funded for the supports that could build his capacity and help him to thrive. But, once he and his family understood how to set NDIS goals – and how to ask for the supports you need – they put it into practice, and it changed everything.
Here’s the conversation we had with Kate.
In my brother’s early NDIS plans his ‘goals’ were very loosely worded. Really, they were a collection of thoughts and hopes he had for the future, but without any real roadmap of how he planned to get there, the people, tools and services he would need to support him along the way, and the funding he would require to turn those thoughts and hopes into reality.
In his current plan he’s been very clear about what he wants to achieve. For example, he wants to feel happy and well, he wants to be able to better regulate his emotions when he feels distressed, and he would like people to better understand and respond to his needs.
He’s tied the goal I mentioned earlier to a detailed, nitty gritty plan for achieving it – which includes having an up-to-date and effective positive behaviour support plan with identified strategies and supports to guide him, our family, and his formal supports.
He’s been very specific about having access to staff who are trained to support him correctly and who he knows well and trusts with his physical and emotional safety.
Because he lives in supported accommodation, he’s also stated that the staff that support him need to be focused on supporting him alone, and not working with a large group of participants at the same time, because that affects his safety and emotional wellbeing.
To achieve this specific goal, my brother's been up front about the supports and funding he needs. He worked with an occupational therapist who prepared a functional capacity assessment for the NDIA. Then, he asked for funding to access allied health professionals who can work together to develop a positive behaviour support plan and implement it with his formal and informal supports, and a support coordinator to assist him to increase his independence, and to find and engage all the providers he needs.
He also asked for funding so his providers can offer appropriate training to their staff to ensure they are qualified to work with him and meet his needs.
At the start of his NDIS journey, my brother didn’t really know what goals were for in the NDIS, why they were so important, and what the risks were for him if he didn’t have them. No one really helped us to understand that and, as his family, we felt we were flying blind and unable to support him in the way we wanted to.
Then, we stumbled across a great disability advocate, and she changed everything. She worked with him – and with us – to make sure he was front and centre in every discussion about his NDIS plan, and his life.
She took a look at his goals, such as they were, and explained that they didn’t really speak about his desire to grow his independence and build his capacity, and they also didn’t show how he planned to make progress and what he needed to have in place to enable him to do that.
She told us he would have a much better chance of getting the funding he needed if he could demonstrate to the NDIA how his capacity would be built by progressing towards his goals – and how the Agency could measure it. And, of course, if we were able to submit a functional capacity assessment and other reports from a wide range of professionals to support my brother’s case for increased funding.
When we knew that, we went from a place where the goals in my brother’s plan were poorly structured and ineffective, to a place where they’re now the polar opposite. We all worked together with my brother to identify SMART goals – Specific, Measurable, Achievable, Relevant and Time-based – and everything changed.
The relief for him, and for us, when he finally got an NDIS plan with the funding he needed – in the budget categories he needed it in – was enormous. Finally, he was able to get on with living his life in the way he wants to live it, and we were at ease knowing he had the supports around him to make sure he could do that in a safe and happy way.
Elizabeth Hickey from AFA Support Coordination confirms that NDIS goals do impact plan funding.
“(Goals) provide the framework against which an NDIS plan is structured and how success is measured at review,” said Elizabeth. “Like each NDIS participant is unique, their NDIS plan should be individualised and clearly identify what they will work towards during their NDIS plan and how that will be achieved. A lot of this is articulated in goals.”
Elizabeth said a statement on the NDIS website that says: ‘Your goals are not directly linked to your NDIS funding' is true and reflects the fact that NDIS goals don’t inform planners what funding is needed. However, she said the statement must not be taken to assume that goals have no positive or negative impact on a person’s NDIS plan.
“The more detailed and substantial – and, in some cases, granular – a goal is, the more scope there is to have important elements approved, which may be rejected when the goal is more general,” said Elizabeth.
She said key points to consider included that:
We asked Elizabeth to unpack what a well structured goal looks like and the outcomes it can achieve. Here’s what she said.
Let’s explore this by considering our young friend Jimmy.
Jimmy is 10 years old and has been trying for many years to learn to ride a bike because he ‘just wants to ride to school like everyone else’. He attends the local mainstream school and is focused on making friends and being more active. He has a disability that affects his social, gross and fine motor skills, and his ability to participate in the wider community.
Jimmy and his informal supports have worked with an occupational therapist and physiotherapist who have provided detailed feedback in their reports. They’ve also made recommendations and provided quotes and cost estimates around the funding Jimmy needs to achieve the goal of riding to school like everyone else.
In preparation for the planning meeting, Jimmy’s informal supports are trying to determine the most effective way to write the goal. Here are two options to approach this:
Goal 1 is not to be automatically discounted – it is clear, specific and measurable. However, while this is a great goal to have, it may actually result in less funding being approved.
To achieve this goal (depending on the evidence provided in reports and requests made), the NDIS may fund participation in a learn to ride program and some sessions with an occupational therapist to build the skills to get to and from school.
Goal 2 allows for much more consideration of the various components of the goal – requiring a more nuanced and customised set of supports (with their appropriate funding allocations). It details the specific things assessed independently as necessary to help Jimmy ride a bike to school like his friends. To achieve this, he needs to work on his coordination and participate successfully in a range of physical activities. It also identifies that Jimmy will need to work on his independence and personal safety skills, along with other social skills, so he can do the activities in a community or other setting with a range of people.
Another positive of having a broader goal like Goal 2 is that it will also allow Jimmy to do other things that require many of the same skills – this could include playing team sports, like basketball, or other physical activities. It may also include social development supports that assist with general independence tasks, like packing the dishwasher or mowing the lawn.
To assist in achieving Goal 2 (depending on the evidence provided in reports and requests made), the NDIS may fund a learn to ride program, social and community participation in a social skills program, an occupational therapist to assist with independence and safety skills, and physiotherapy sessions to assist with gross motor skills.
When preparing an NDIS goal, it can seem quite overwhelming. Breaking each goal down into its specific areas – just like we did with Jimmy – actually assists with this preparation by focusing the justification to a single outcome.
In general, here are a few things to remember when setting a goal.
1. The goal should ideally last the length of the plan
When a goal allows room to grow, it will be more flexible and increase opportunities for different methods of implementation.
In Goal 1, once Jimmy is able to ride to and from school, that goal has been achieved.
In Goal 2, not only could Jimmy learn to ride a bike, then learn to get to and from school, but he also can learn the road rules and skills needed to then do that independently, and hopefully go to different locations. But he could also use this goal to participate in therapy to increase independence and safety skills, an after school or school holiday skill building program based around physical activities, or even therapy targeted at active travel skills.
2. A goal should be flexible enough that it can adapt to changing situations
If, for any reason, Jimmy is no longer able to ride to school, Goal 1 is no longer achievable or valid.
Goal 2 allows Jimmy to increase his skills across a range of activities in any location – this allows for changes to situations to occur and the ability for different methods to achieve increases in skills to occur. This goal also allows for Jimmy to have choice and control over the activities he participates in at any given time (he may fall out of love with cycling over winter for instance).
3. The best goals are ones where more than one functional domain is being worked on
There are six NDIS functional domains: mobility, communication, social interaction, self management, learning, and self care.
In Goal 1, the focus is on mobility only. In Goal 2, by aiming to increase coordination, social participation, safety and independence, the goal meets mobility, communication, social interaction, learning, and self care.
4. Goals should reflect the reports and supporting evidence you provide
Make sure you discuss with supports what it is you want to achieve in your next plan before they write your reports, to better align client expectations with support opinions.
For Goal 1, therapy providers could easily support participation in a learn to ride program and leave it at that for a report.
For Goal 2, by discussing options for support and identifying that coordination, safety and independence skills, along with an increase in Jimmy’s social skills, will be needed for him to be able to achieve riding to school like everyone else, Jimmy’s NDIS supports can outline the wide range of supports needed so that a more complete package of funding is provided to help Jimmy achieve this goal.
5. Not all goals may be funded – however the supports needed to offset the impact of a disability on achieving that goal may be
For Goal 1, funding support for a child to participate in a learn to ride program is likely to be appropriate – especially for a 10-year-old like Jimmy. Funding for someone to escort Jimmy to and from school is less likely, as that is typically a parental responsibility.
For Goal 2, funding for support to participate in a learn to ride program – therapy that will assist in increasing safety, independence, and communication – may be appropriate, as may participation in group programs based in the community that are about increasing social skills and community participation.
While your NDIS goal may not directly impact your NDIS budget, if that goal is well written, considers all the supports needed, and is backed by evidence provided by supports in their reports and quotes, then you’re more likely to increase the scope of support provided in your next NDIS plan.
*Kate is a pseudonym to protect her brother’s privacy.
For people with disability, especially those with cognitive or intellectual disability, the right to make decisions about themselves is often overlooked – and the consequences can be devastating.
Making decisions and choices about your own life is a basic human right.
If you feel like you’re not being given the opportunity to exercise this right, supported decision making can help.
Supported decision making is a legal framework which promotes the rights of people with disability to make their own choices.
It usually involves support from a team of trusted people chosen by the person with disability – often it’s family members, friends or advocates. The team will work with the person to help them to understand information, express preferences and make informed decisions.
The person or people who help make decisions are called ‘Decision Supporters’. They don’t make decisions for people with disability, rather they help individuals to come to their own decisions about the choices they want to make.
To date, there have been limited formal guidelines around supported decision making, perhaps due to the fact that everyone involved in it is so diverse.
However, in early May 2023, the National Disability Insurance Agency (NDIA) released a new supported decision making policy. You can find information about the policy, how it will be rolled out, and how it was co-designed with people with disability here. There are summary documents and Easy Read versions too.
The policy will be implemented during 2023 and beyond, and it’s designed to empower National Disability Insurance Scheme (NDIS) participants to make decisions that relate to their plans and funding for themselves.
That policy is for supported decision making and how it relates to the NDIS, but there’s also a report from the Disability Royal Commission that’s definitely worth a read! You can find standard and Easy Read versions, as well as an explainer video with transcript, here.
Out of this report has come a recommendation for ‘nine universal principles’ to inform a framework for supported decision making. The first four were conceptualised in 2014, while the remaining five came from a recent review.
The nine principles allow consistency and guidance for people with disability who need supported decision making and provide support and expectations for the team assisting with the process.
The nine principles are:
How can you, or someone you know, organise supported decision making?
For people with disability: Talk to someone you trust about it. You could share this article with them.
If you have a support provider you’re working with, you could find out if they offer supported decision making.
If they don’t, Inclusion Australia has lots of resources, developed under the leadership of people with intellectual disability, which can help get you started – and you might be able to share them with the people you’d like to work with to start supported decision making.
Or you may like this resource, funded by the Department of Social Services and designed by Western Australia’s Individualised Services.
For potential supporters: As well as using the above resources, South Australia’s Office of the Public Advocate has compiled a list of free training resources to understand supported decision making and some of the ways you can support a person with disability by adopting it.
Much like any skill, you’ll get better at supported decision making by practising. If you’ve never had the opportunity to make decisions for yourself, it can feel unnatural or overwhelming when you start making your own choices.
But it’s worth persisting. Remember, making decisions about your own life, and having autonomy – that’s making informed decisions of your own free will – is your human right.
It’s not about being perfect or making the ‘correct’ decision every time. It’s about having the dignity to make mistakes and learn from them. It’s about being able to make choices that are right for you, not what other people think is best for you.
It’s your life to live and you are in control.
Dino Mennillo is the Director of OTFC Group, South Australia’s longest-standing private paediatric occupational therapy practice. Qualified as an Occupational Therapist (OT) since 1993, he took the time to explain how occupational therapy can benefit children, teens and adults with disability, the joy of therapy through play, and how you can maximise therapy time for life-changing results.
Occupational therapy is a really broad field – we basically are looking at people’s lives and how they participate in day-to-day activities, finding ways to help them overcome challenges and be as independent and functional as they would like to be.
Occupational therapy can help with a rehabilitation process after an injury, getting muscles functioning, but it is also about access, how to use things, and how make modifications to environments like homes, schools or workplaces.
In the area of paediatrics, we deal a lot with families with children who have diagnoses of developmental conditions like autism, intellectual disability, or cerebral palsy – things that impact on how a child typically develops – and how to compensate or provide therapy to improve elements of function.
We help children attend mainstream school or support them being able to access special school. We also support children and young people with learning difficulties, sensory processing disorders, behavioural concerns, and coordination challenges.
OTFC Group liaises with health professionals to help them with a holistic view of the child – basically, we go where people need us to support them.
Part of what we do is also to educate. I do a lot of professional development training for schools and health professionals, understanding the differences that exist, and the strengths and challenges for each child.
We are mindful that our role, particularly in this practice, is that we always ensure the family and caregivers feel a sense of empowerment. They have control of decision making. It doesn’t mean we always agree, but we respect that.
In our clinics, we support children from 12 months to adults and really, the earlier the better when it comes to treatment and support. We often see younger children when parents are concerned their child is not reaching milestones at appropriate times and they may be referred by a paediatrician or other allied health professional.
Then we might see another cohort at four or five years of age if there are concerns that they aren’t ready for school or are not keeping up with their peers.
We work with teenagers and adults for the first time when they may have been diagnosed later – it can be support because they are not accessing school, not able to get a job, sometimes not able to leave the house. There can be co-morbidities like depression or suicidal ideation, gender issues, or dysmorphia.
Currently, for children under seven years, they can go through their local Early Childhood Partner (ECP), and for those older than seven years and adults, they can have a conversation with their Local Area Coordinator (LAC) or National Disability Insurance Agency (NDIA) planner.
From 1 July, the early childhood approach will be extended.
Most families, before they are certain whether they can apply for National Disability Insurance Scheme (NDIS) funding, might come in for an assessment to determine areas of strength and deficit for their child. This assessment will speak to functional outcomes, and if there are deficits we think we can improve or support, then families can use that assessment in their application for funding.
At the end of a period of occupational therapy, we’ll do a review assessment and sometimes children will not need more sessions, and other times they may need more support as they get older. It doesn’t mean they haven’t progressed, but rather that a child at three years of age doesn’t have the same complexities in their functional life like a child at eight years, or the changes that come again as a teenager.
Functional capacity assessments have become more commonly requested from families as they have been told it’s what they require for their funding.
At OTFC Group, we provide therapy in blocks, rather than as an ongoing commitment. We might see a young person for 10 to 12 weeks and then we take a three to six-month break. Then they might come back for another block.
Instead of having ongoing occupational therapy for 52 weeks of the year, it’s just 20 to 24 weeks – but half the time doesn’t mean half the progress. I’ve found that non-therapy time is really important for progress as well.
We’re hopeful that not only has that child been able to improve their own skills and take on things at home at their own pace, but they can push their own boundaries a bit and become their own ‘therapist’. Parents are also better equipped to understand how to support their children – knowing when their child is most open to play, and how to use items they might already have at home to learn through play.
Other ways to keep costs down include choosing group sessions, which are less expensive than individual sessions and also a way for children to connect with peers.
Using allied health assistants who are not yet fully qualified is another way. They have to have an OT supervise their treatment plans and notes, so you still receive the expertise and oversight, but the hourly rate is significantly less while allied health assistants – usually student OTs – are still studying.
For therapists, they need to be good reflective listeners – knowing when to listen and when to talk. They need to note things that are important to the participant and their family and be very good at engaging the child or adult. They need rapport-building skills so they can start to develop trust.
For participants, they have to be at a stage where they are open and willing to accept help and support. They have to want to engage, to be willing to try and give themselves a go.
I see in my staff how willing they are to do more than the scope of their job. They are people who will forgo their lunch break, or stay later at work, or do an extra set of things to help a client.
I found one of my staff photocopying so much the other day, and she looked at me like she was caught doing something wrong. She said she was photocopying and laminating flash cards to send to a family in the country who didn’t have access to them, and I said: ‘You are the exact reason we exist. You are providing a service for someone who wouldn’t be able to access that – I don’t care how much you photocopy!’.
I always say, do not get into this profession if your motivation is money driven. This is not a profession you’ll last in. You have to identify what you love about occupational therapy. You have to have a passion for it.
Oh, and we all seem to love eating tuna and rice!
I have two – my favourite piece of therapy equipment is called the Batman Swing, and it’s made up of cut up tyre inner tube, four parts tied in one central rope, almost like a marionette. To use it, a child must switch on the muscles around their spine and in their abdomen, the core postural muscles. I’ve developed this activity with it where they stand and then jump forward – it’s like a leap of faith.
When you see a child with sensory processing issues or developmental difficulties master the Batman Swing, it’s almost like my secret sign that they are ready to graduate from occupational therapy.
I also love the rubber matting with the alphabet or numbers on it, the tiles that interlock. You can use them to build a cubby, make an igloo, or a cubby that has a small tunnel, or an L-shaped tunnel. Kids have to navigate the space without breaking the tunnel, they have to be aware of their body, and it also helps kids who aren’t good with small spaces.
I can put cushions on them and have them smash the boxes, I could come up with 10 different activities for them! Every night my son would want me to make a cubby, my daughter would take her tea set in there – people don’t realise how much they can actually do with such simple and cheap things!
Find a credible OT – someone who can express to you what their principles are and what their level of training is. Word of mouth is always a good way to find someone, especially word of mouth from trusted professionals in the health sector – ask your GP, paediatrician, even your physiotherapist or other allied health professionals.
It’s important that participants and families realise that therapy isn’t just about attending the therapy session itself. If parents don’t commit, then the child will not make the gains they are hoping to see.
Remember that quantity is not quality. When I started in the 1990s there were about six private OTs in South Australia, because there was no funding and building and maintaining a practice was really difficult. Now, it’s very different – an OT can come out of university and, due to the demand for services, can become very busy quickly.
Some may think that high demand equates to being a good health professional, but that’s not the case. You can’t expect to be a newly graduated therapist and think you have the skills to work with a child of any level, particularly a complex one – I certainly love the enthusiasm, but sometimes that’s not what children and families need.
Therapists at OTFC Group have to be exceptional. New therapists to OTFC Group don’t work with more complicated clients until they have at least 12 months’ experience. OTFC therapists don’t apply to do assessments of children until they have at least two to three years of experience. I find if you have those standards, you can ensure quality is staying at a high level.
Time and resources are the biggest challenges we face. There’s never enough time for appointments, never enough therapists, never enough funding. There’s always a need for more.
Also, being able to predict the changes that will occur, whether that’s with the NDIS or within my own practice.
And then you have the personal work challenges as a therapist – am I doing the best, is the child improving, is the family feeling supported?
The clients and their victories are the most rewarding thing. It’s when someone is able to walk for the first time, able to go out for a meal with their family for the first time. When a young person gets older and gets a job, when they are employed or go to uni, even when they have a brother or sister become an OT because of the impact they’ve seen on their sibling.
It’s the hugs you get from the littlies or seeing their faces light up when they achieve something new.
There is nothing you could give me that I would swap for that. I have the best job. It’s so rewarding!
Want to learn more about Dino?
Designed to describe images to people who are blind or low vision, image descriptions can also help people using language translation in social media. Here’s how.
A traditional image description does what it says - it describes an image. It’s different to alternative text, AKA alt-text, which is text that isn’t visible, quite brief (often there are character limits) and which will be picked up by screen readers.
An image description tells a very short story about an image.
Alt-text might describe the image above as “Woman in wheelchair using laptop computer.”
An image description can go into more detail. It might say:
“Sarah, who has beautiful dyed magenta and purple hair, is in her power wheelchair with a white laptop computer on her lap. She’s wearing black framed glasses and a white t-shirt. She’s smiling as she looks at the screen and she has one hand on the keyboard. There is a futon bed behind her and daylight visible through the windows.”
See how the image description humanises the scene and illustrates it? That’s not to say it’s better or worse than alt-text, just that image descriptions can play a different role and add to the understanding of an image!
When it comes to an image with text in it, it’s vital that all of the text is transcribed. This is for anyone using a screen reader or translate, if they are reading the screen in a different language.
For an image description of a text-based image, simply transcribe all of the text. If there’s room, mention any logos or stylistic elements, for example, if there’s a border, or a design.
Image descriptions are important on every image. And image descriptions are for everyone. While alt-text is sometimes hidden away in advanced settings, anyone can add an image description to their post. And the more people that come across image descriptions, the more others are aware of what they are and why image descriptions matter!
After all, accessibility is for everyone, and it’s for everywhere. Accessibility isn’t just step-free access, or hearing loops, or sensory breakout rooms (and there needs to be more!). Accessibility is about being online and having the full experience while you’re there.
