Luka is 11-years-old, has two older siblings and is incredibly cheeky. However, Luka’s full potential is still unknown. He was born with a rare chromosomal abnormality known as 5p15.1, a condition that can affect development, health and behaviour. How it affects each individual varies.
“We don’t know the extent of what Luka can do. It’s a learning adventure,” says his mum, Amy.
Amy has been self-managing Luka’s support for many years. But as Luka’s condition progressed into requiring behaviour support and elements of restrictive practice, she needed to find a disability support provider.
“We needed to go with a provider who was NDIS registered,” Amy explains. “I started calling around and spoke to a lady at Hireup. The conversation just flowed and I signed up based on that initial conversation.”
Once the family joined Hireup in 2022, Amy connected with her Behaviour Support Relationship Manager, Loren, who helped guide her through the early "stress and challenges" of learning about restrictive practices.
“I felt uneasy about things,” Amy says. “Restrictive practice was like this big, scary word… We didn’t want to do anything wrong.”
“[Loren] helped to give me a really good understanding of the legislation. She showed me how to practically explain restrictive practices, what it should look like for support workers, and how to give workers a little bit more knowledge around what they can and can't do.”
“She empowered me with the knowledge to stand on my own two feet and really advocate.”
Amy believes that education, training and ongoing support are the most important things when it comes to behaviour support. To make sure Luka’s support workers, specialists and providers feel confident in helping Luka, she’s developed a formula to ensure “everyone’s on the same page”.
“I basically try to involve them as much as I can.”
To do this, Amy has created visual schedules that Luka’s support workers can quickly reference. Invites workers to Luka’s appointments so they can hear information first-hand. Pulls information from Hireup's shift notes feature to give occupational therapists and other allied health practitioners an insight into Luka’s everyday support. And has a Google Drive that houses all relevant documentation for providers.
“Luka certainly keeps me busy. But he’s taught me to live in the moment with him.”
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