University life - part of Jack's grand design

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Like the digital future he’s cultivating, happiness for all is part of Jack Wason’s grand designs for reality. 

Marking 2020 as the best year of his life so far, the 19-year-old, who has Duchenne muscular dystrophy (DMD), is making great progress in his pursuit of those dreams. 

“I really enjoyed living independently for the first time and pursuing my computer science degree at Wollongong Uni in 2020… it was great, so it is really good to be back this year,” he said.

With DMD causing progressive muscular weakness, Jack can no longer walk and has lost the majority of his upper body strength. A self-described tech-head, Jack’s fascinated by computers and video gaming, making his degree of choice a perfect conduit for his interests and plans for the future. 

Despite his determination and support from the NDIS and his family, Jack’s push for independence was dealt a curveball during his first year of study, when the COVID-19 pandemic forced a return to the family farm from his unit at Wollongong’s on-campus Kooloobong Village. 

“I spent three and a half months back on the farm, but was really keen to get back on campus as soon as I could as I was missing the social side of things and the independence,” he said. 

“I got back at the end of July for the start of the second semester and with the help of my support coordinator, Mark, it was pretty smooth going… This year has been great.”

Jack has been able to slide effortlessly back into study while living in his custom, accessible room which features automatic doors and bathroom modifications.

Jack’s NDIS plan funds his motorised wheelchair, and previously made it possible to hire key equipment such as a bed, mattress, commode chair and hoist. However, a review of his plan provided additional funding for him to purchase those items outright. 

With family managing his plan, Jack has complete control over his choice of support workers, who he sources using an online platform. The workers are on a 24/7 roster, and assist with daily needs.

Jack also has his own modified vehicle that his support workers use, which allows him to get out and about, and attend specialist appointments at the Prince of Wales Hospital. 

“I have three support workers who provide personal care in the mornings, and three who are on call for overnight support if I need anything,” Jack said.

 “I’ve become much better at doing the uni stuff on my own, and I can do all the coursework on my computer with no need for a scribe.”

Jack’s thriving in the Kooloobong community, with the ever-smiling student’s happiness soaring. 

“There’s a team of community leaders at Kooloobong, and I’m on that team now,” Jack said.

Jack in his chair outside his university accommodation

“Last year they made things really inclusive for me… It makes everyone feel at home, so, I thought, ‘I can do that’. We organise events for all the residents.”
Fittingly the desire to give back and provide an inclusive, accessible environment for all intertwines with Jack’s long-term ambitions. 

“I’d love to be doing something to help people whether they’re in my position or not,” Jack said. 

“I was thinking of an app to help people in rural areas get better access to support. My family found (in the country), there’s not that much around, so it’s about developing something that makes finding support easier. 

“My focus is on what I can do, not what I can’t do.”