Ben Waechter and his wife Suzi aren’t afraid of a challenge. After their youngest son, Harry, was diagnosed with cerebral palsy as a toddler, the duo dedicated themselves to finding solutions that would support Harry to live his best life.
When they couldn't find a children's disability expo, they started their own.
When they couldn't find a suitable group exercise activity, they started their own.
And when they couldn't find accessible toilets at events – you guessed it – they made their own!
Plus, they helped others along the way by starting their own support coordination business as well.
Ben tells us all about their business ventures and his hopes for the future of the disability sector.
Harry was born in 2013 at 24 weeks and he spent 114 days in hospital. During that period, we started noticing he was missing milestone markers, and later on we got a diagnosis of cerebral palsy. They suspected it for a long time, and then he was diagnosed pretty early on, at about two or maybe three years old.
Harry’s birth and his time in hospital changed everything for us. I’m a bit of a fixer, so going through that, and not being able to fix it for Harry and our family, was hard.
But we’d do research daily – I’d be on one computer, Suzi on another – trying to find out if there were cures or treatments, basically: ‘How do we make the best life for Harry?’.
Everything was in South America or Italy or the United Kingdom, and we got giddy going to therapists in Adelaide who would then say: ‘We don’t deal with physical disabilities’ or ‘We can’t do the program’.
Then we went to our first disability expo, but it was really aimed at adults and seniors. I think they had 10 providers for children, and we knew seven of those, so we went to the other three. We looked for a children’s expo and we couldn’t find one… so we started our own.
It came from a very selfish place really, just wanting to fix things for Harry, but it also helps other people, so it’s very rewarding!
That’s basically a natural flow from the expo, because afterwards, we’d get people calling and saying: ‘I saw this person at the expo, how can I get in touch with them?’ or ‘Where can I find this?’ or ‘Do you know of anyone else?’.
So, we were doing the support coordination role for free and then we realised we could set up the business and it would actually be an income for the KYD-X charity as well – part of the invoices and income we generate goes towards the charity. Once again, it’s all about problem solving!
We don’t think any one person knows everything about the NDIS or disability. We like to work as a team, we have very knowledgeable coordinators – all with lived experience – and we never act as a gatekeeper. We very rarely say no to our clients, what we do is sit down and educate our clients and say: ‘If this is the decision you want, here are the pros and here are the cons’ and we let them make a properly informed decision.
I see our role as trying to do ourselves out of a job. I want our clients to be their own best advocates and make decisions and have the skills to do it for themselves.
That’s because of Harry, again. Because he has a physical disability, it’s difficult to find group activities he can be involved in, especially around exercise. A lot of services are geared towards the autism community because it’s such a big one – 40 to 45 per cent of participants in the NDIS have an autism diagnosis, while cerebral palsy and physical disability is around 10 per cent.
We couldn’t find any programs for Harry to exercise with his peers, it was always one-on-one therapy with an adult, and he didn’t get that football or netball team experience.
Frame running is one way of him exercising and getting out of his wheelchair, which is really beneficial. For many wheelchair users, if they sit in their wheelchair too long, their body systems slow down, they can get skin rashes, pressure sores etc. There’s such a benefit to being upright.
Harry absolutely loves it mentally, too. On Wednesday morning he wakes up and cycles his legs like he’s running, and when we pick him up from school, he’s doing it again. It’s now gotten to the point that if one of the other kids sits down during the session he’s saying: ‘No, come on!’, and offering his arm and his encouragement. He wants everyone to be included.
Now we have Frame Running SA as part of KYD-X, in collaboration with Achieving Abilities. We’re in our second term and we’re raising money to purchase frames to have more kids come out and join.
When we go out with Harry and we go to an accessible toilet, in most cases there’s a toilet in the corner, a tiled floor and a basin. We either have to wrestle him in his chair or we put him on the floor of a public toilet. It can be quite socially isolating.
We tend to base our attendance of events on: ‘Do we even bother going?’, or if we do go, we need to do it on a time schedule – it’s two hours at the event and then we have to go. It often means our eldest son, Austin, misses out, Harry misses out, we all miss out.
So, Off The Floor stemmed from the idea that we could retrofit accessible toilets with the extra equipment. But then we thought all that money would be spent in just one spot, so we came up with the idea to make accessible bathrooms that are portable too!
We came up with a design to put the accessible bathroom in an enclosed eight metre trailer that’s three metres high and two and a half metres wide. It has all the facilities of an adult change facility – toilet, adult-size change table, ceiling hoist – and the trailer is on hydraulics that can lower it down to the ground. This way, we can sit the trailer on its belly and the tailgate becomes the ramp, allowing easy access.
We have the prototype that’s taken me five years to design, raise funds for, and manufacture. Our goal is to have a fleet of these – I want them all over Australia and then all over the world! I want it to become the norm, rather than the exception.
The biggest change I'm seeing is people becoming more aware of the fact they have a choice. They don’t have to accept: ‘That’s all I can get’. If they don’t like something they can speak up and change it.
That choice has been really awesome, and at the same time, the NDIS is a beast that is untamed and it’s getting out of hand. It’s a little bit like the wild west out there at the moment and it’s really disheartening to see.
I really hope that we can reign in the cost of the NDIS – there are a lot of people out there working in the sector who do not have the best interest of the participants at heart. The Scheme is run by ethics and not rules and regulations, and there can be an extreme difference in ethical practice from provider to provider.
I just hope that people like Harry can have a safe and successful future.
All the projects and all the events we've created come back to what issues we’ve had with Harry and accessing the community. When we come across the next issue, we’ll try and fix that also.
We continue to work with councils and events that want to be more inclusive and accessible, because everyone wants people not only to attend their events but also to stay. The more people stay at an event, the more they spend – we found that out for ourselves because of a Changing Places accessible toilet that allowed us to spend five hours at an event instead of two… we also spent a whole lot more money!
So, if you’re running an event and you want everyone to come and stay, you need to provide the facilities.
Harry is a daredevil and loves going fast – and trying to fulfil that need for speed is what we are currently working on. Go-karts, motorbikes and fast cars are on the cards, we want to find a way for him to have the same experiences that we had growing up.
It would be cool to have South Australia be the adventure capital for people with a disability.
