Leanne Hall cares for two complex needs children and has struggled for years to organise support from the NDIS for her son, Ollie. Rachael Kernick of Synapse became part of ‘Team Ollie’, and has contributed to life-changing funding for the family.
“Like most parents, I just want my kids to be happy and to achieve their dreams.
I’m Mum to 2 complex needs kids and a carer for my elderly parents. I don’t think I’ll ever stop advocating for my kids, but sometimes you get worn down and have to dig deep to find the strength to keep fighting.
My Ollie is 12. He’s a beautifully natured, smart young man and is autistic, has ADHD (Attention Deficit Hyperactivity Disorder) and Hypohidrotic Ectodermal Dysplasia, a rare genetic disability.
He was diagnosed with ADHD at age 4, and then Autism Spectrum Disorder (ASD) at age 5. It’s not his disabilities that have been the most challenging for us as a family. Ollie has been terribly badly bullied in the various schools he’s attended. It’s been really distressing for him and he has suffered mentally as a result. He just wants to be like the other kids and have friends.
It very much takes its toll as a parent, too. I think we all worry about our kids but to see them hurting like that, on top of everything else, is a lot to bear.
We’d been trying for years to access to NDIS for Ollie, and we’d had years of frustration.
We’d been through all the paperwork, submitted it and they’d lost the information. It went back and forth with emails and calls; we just couldn’t seem to get any traction at all. Eventually I got a notification that they’d closed the access request.
We had to stop therapies for a while there for Ollie as we were paying for them out of pocket. At the same time, we were trying to help our ASD daughter to also access therapy and it came down to choosing to help one or the other as we couldn’t afford to pay for both.
About a year later I tried to apply again and this time I went physically to the Local Area Coordination office, sat with them and went through paperwork; they stamped it. About a month later I got a letter from NDIS saying they hadn’t received the information.
I thought it must have been a mistake, so I didn’t do anything at the time. Later, I called the NDIA office to say, ‘I have sent this paperwork multiple times, I know I have sent this’. ‘We can see it’s in the system’, they said, ‘but it’s lapsed, so you’ll have to do it all again’. I just didn’t have the mental capacity to deal with it. It had been going on for years and I was exhausted.
Eventually another Mum told me she’d had some trouble with the system too. That’s how I ended up speaking to Rachael Kernick at Synapse to ask for her help in advocating for Ollie.
The first thing she said to me was, “I’m on your side and it won’t cost you a thing. I know you’ve struggled and I’m here to support you.”
I felt heard, which is really important, but I also felt that I was able to share the burden with someone and we now had a ‘Team Ollie’.
Rachael was just brilliant. She even walked to NDIA’s offices to talk to them face to face, and within 7 days I got a letter saying access request has been approved. A few weeks after that I was speaking with a LAC to get Ollie’s NDIS plan. Rachael was on the Zoom call with me just to ‘hold my hand’. It was reassuring to have someone that knew the system to guide me and support me through this next step.
Funding helps us to help Ollie. He’s coping better with mainstream schooling now because of the support funding provides, and he continues to hold his own academically. Oliver will be starting psychology with a young, male psychologist who I think will be great for him entering his teenage years. I’ve arranged occupational therapy to improve his fine motor skills. And I’ve just appointed a plan manager to help manage the financial side.
He’s also started ‘Jedi Training’ with a Lightsaber Theatre Combat Academy called ‘Sons of Obiwan’. It helps Ollie both socially, as he is interacting with his peers and meeting kids with similar interests and physically, as using the lightsabers mobilises both fine and gross motor skills. We hadn’t been able to do these things before due to the additional cost and money stress it would put on our household.
We are working on increased independence with him and teaching him to make his own sandwiches. I try and encourage him to do it himself first. He goes to Scouts too, which has been helping him with this independence.
Ollie is starting year 7 next year, and we wanted him to have the best start in going into year 7, particularly given what’s happened in the past. He’s decided he wants to be an ‘Engersmith’ when he grows up. It’s a job he has invented – a combination between a blacksmith and an engineer. He has so much potential.
My aspirations for Ollie are for him to be safe, to feel that life is worth living, to feel loved, to be happy and to have good friendships. If we can achieve that, I will feel that we have got him to a good place.
I want him to be able to achieve his dreams. Having this funding, and access to the right supports for him, is a big step towards helping us achieve that. It’s been life changing.”
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