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Owen’s Story

Navigating the NDIS

The introduction of the NDIS has been heralded as a huge success. However, for some it has been a frustrating and bureaucratic nightmare. “A revolving door of new faces requiring the same information” as Owen’s mother Claire succinctly puts it. “I have met with too many people who did not know what questions to ask, resulting in support plans that have not reflected the needs of Owen. The NDIS planners we have met have been overwhelmed and unable to understand our situation and therefore provide a plan that meets Owen’s needs”.

Owen is ten years old, and in most ways, he is typical of boys his age. He has a love of technology, music and sport. He is growing fast. However, unlike most kids Owen’s involvement with his passions is very different.

Owens cerebral palsy means he can only communicate through the use of his PODD Communication book and an electronic device known as Dynavox. He is also good at expressing himself through his face and can indicate yes and no through head movements. Communication can still have challenges. The timescale of helping Owen learn new skills is challenging – it can take a long time. Claire said “It can be hard to know how much he is improving or learning and whether you are doing the right thing”.

There is progress, a bit more nuance, a little more unprompted communication, this often leads to times of amusement when not delivered as intended. However, we are talking about complex skills, involving deft facial control, memory and language knowledge.

Owen’s parents, Claire and Haydn know that teaching Owen communication skills is going to be a long-term project. The continued advances in technology provide alternatives that bring this closer. He attends the same school as his brother Ned, and this brings him into contact with children of his age in the area. Claire and Haydn are keen for Owen to be treated just the same as any other student despite his special needs. Technology and the web play an essential role in Owen’s life. His iPad give him control over what he watches and he gets a real kick of playing an electronic organ.

While their involvement with the NDIS has been difficult, it has made a difference. Owen now receives support during the week preparing him for school and at the end of the day. “It was difficult to accept strangers coming into our home at first”, said Claire, “especially with new staff. Independent Disability Services has been very approachable, the team there are very responsive and we have a great couple of support staff who get on well with Owen and understand his needs.”

A very special family supports Owen. When I left, Haydn was preparing to take Owen swimming. Not just a case of collecting your togs and jumping into the car, the process of getting into the car can take over 15 minutes. When you consider the other interests Owen pursues, horse riding, football and basketball, you can see how much dedication and love he receives.



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