The one question people who work with NDIS participants should always ask

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What does fun look like for you? It’s not a question that comes up frequently in a professional context; but it is one that Peer Mentor and disability advocate Adrian O’Malley has begun asking a lot in recent years.

Adrian – who lives with disabilities himself following a stroke he had 16 years ago – worked as a NDIS Support Coordinator for two years, regularly meeting with participants to assess where funding might help meet their goals.

Early in the role, Adrian noticed he had fallen into a familiar pattern: helping the NDIS participants he worked with achieve functional goals, largely centred on rehabilitation, home modifications, transportation, or employment.

One day, he decided to shake things up, and asked NDIS participant Sam*, ‘What does fun look like for you?’

“I will never forget the day I first asked this,” said Adrian ahead of the National Disability Conference, hosted by Informa Connect.

“Sam had profound disabilities and relied heavily on his wife who cared for him full time. Like many NDIS participants, he had been so consumed with functional goals, like getting in and out of his front door safely, he didn’t stop to consider how NDIS could actually make him happy.”

Upon being asked the question, Sam initially hesitated.

“Like many of us, he had never been asked this question before, let alone by a Support Coordinator. It really made him stop and think and was a profound turning point in both his relationship with NDIS and his life in general.

“He initially told me he wanted to read a newspaper under a gumtree, but when I encouraged him to dream bigger, he started brainstorming an overseas holiday – something he and his wife hadn’t managed in 19 years. He totally got it – grabbed the bull by its horns!”

With this clear goal in mind, Adrian was able to help Sam secure the resources needed to make his journey and vacation a success.

He ordered a new pressure cushion to help Sam deal with eight hours on a plane, a new lightweight, collapsible wheelchair to replace the “old clunker” he had been putting up with, some cutlery he could travel with, and accessible clothing and shoes to assist with his daily routine while travelling.

The effort paid off. Sam and his wife set off to Japan for a two week “bucket list” vacation – their first overseas holiday in almost two decades.

“Their trip went smoothly and Sam told me he and his wife had “a bloody good time”,” Adrian said. “Selfishly, I also found it extremely rewarding to see Sam having a taste of something other than rehabilitation.”

Dreaming big

Adrian now helps all of the NDIS participants he works with dream bigger by asking the same simple question, ‘What does fun look like for you?’.

“People – regardless of whether or not they have disabilities – don’t immediately know the answer to a question like this. They have to stop and think about it,” he said.

“This very act [of stopping and thinking] can be enormously beneficial and gives birth to some wonderful aspirations, with which NDIS funding can help.”

Improving mental health statistics

Statistics seem to agree that using NDIS more creatively to boost feelings of happiness may be warranted.

In Australia, 36 percent of people living with disability experience depression, or other mental health issues, compared with 12 percent of the general population.

Rates of psychological distress are also prevalent among adults living with disability. Around 32 percent experience it regularly, compared with 8 percent of adults who don’t live with a disability.

According to the Australian Institute of Health and Welfare, mental health conditions can be both a cause and an effect of disability.

They are associated with restrictions around communication, mobility or self-care – all of which can impact quality of life.

Moreover, 42 percent of people living with disability report severe or profound limitations in their core activity.

Leading by example

Adrian knows this all too well from his own lived experience, and believes simple interventions like his ‘fun focussed’ strategy can help.

“From my nine weeks in hospital learning to walk and talk again, I have always placed a high value on independence, but I used to be very limited with my thinking. When I thought about how others could help me, it was always in terms of getting lifts to and from work, or mundane things like that,” he said.

Nowadays, Adrian thinks bigger and has used his NDIS funding to secure a recumbent tricycle, so that he can continue to embrace his love of cycling, post stroke.

“I have always loved cycling and thought my bike riding days were over when I had a stroke. But with a bit of imagination and help from the NDIS, I was able to arrange a recumbent tricycle, which is markedly safer on the roads for someone with my kind of physical disability and visual impairment.

“I found an NDIS provider who could help me access one – and went in with an, ‘if you don’t ask, the answer is always ‘no’’ attitude – and eventually the NDIS agreed it was reasonable and necessary.

“Riding around on my trike now makes me feel around ten foot high and bullet proof. It’s bloody brilliant! Sure, with flashing lights and a flag [to make me as visible as possible to other road users] I might look like a Christmas tree on wheels, but that is what fun looks like for me.”

Thanks to this breakthrough, Adrian now considers it his mission to set other NDIS participants on the same path and pay forward the benefits he has reaped.

“With a bit of head-scratching and a can-do mindset, people living with disability can have the lives they have always dreamed,” he said.

Adrian is a horticulturalist turned Peer Mentor, well known for his advocacy in the disability space. Hear more stories and expert advice from him at the National Disability Summit, hosted by Informa Connect. This year’s event will be held 15-16 August at the Crown Melbourne. Learn more and register here.

*Name changed for privacy.