The Sonter Family

‘’Our world turned completely upside down, from that moment onwards it was never the same,’’ recalls CPSN member David Sonter as he reflects on the time his son Kai was diagnosed with cerebral palsy.

‘’We weren’t sure what would happen, what kind of life he would have as he grows up. 

“Over the next couple of years, he was in and out of hospital all the time, he had irregular bleeding and feeding problem, vomiting a lot. Those first 3 years were full on. Then we moved down to Melbourne, as Kai was still experiencing those early issues. We had exhausted Queensland teams and we had family down here, so we moved here. We live Bayside here, we live in Aspendale. We’ve been living here for 10 years now.’’

David also recalls that his accessing support workers and respite for his family was challenging, particularly when people coming into their family home didn’t have the right skills, knowledge and values to provide the care they needed.

“Kai has severe hemophilia. It’s a difficult condition to understand. We’d have university students come around from other agencies who we’d never seen before and they didn’t know what hemophilia is. It was very frustrating.

“I went to a disability services expo for the Kingston Council area and CPSN had a stand there. I got chatting and mentioned the problems I was having when support workers through other disability service providers. From the trade show meeting, I found I could hand-pick and select the support worker through CPSN, that it could be someone from our network, someone that knows Kai from an education setting or a therapy setting. And I thought it was a great option then, almost five years ago. It’s been an absolute game-changer.”

“Very slowly we approached one of the aides that worked at Kai’s school, and she was interested in some additional work. We spoke about it and she was on board.

“We got her signed up, certified and registered with CPSN. And that was it! Then we got another aide who worked at Kai’s school, and we got our relatives on board. We explained that there’s funding available for the people we engage as Kai’s support workers. You’re not just taking Kai for ice-cream, you’re doing intimate things for a 12-year-old, such as lifting him out of the car and peg feeding. That’s going above and beyond, and you should be compensated for that. At first, they felt a little awkward getting paid as friends, people we know and relatives but honestly it makes us feel better. That’s key, we’re employing them because we feel better that they’re getting paid. We don’t feel guilty.

“If I met someone on the street and they had a young child who needed a support worker, I’d say, this is a perfect way for people in your circle who know your child, to get involved in some paid support work.

“Kids with cerebral palsy are very different to look after. They need specialists. You’re not going to let just anyone look after your very complicated child. With CPSN you don’t have to choose someone from a disability service, it could be your neighbour or someone from your community and that makes all the difference.’’