Michelle (mother of Ella and Penny): Ella is 7 years old. She’s a bubbly, happy child, full of personality, very cheeky and has an amazing creativity and sense of humour.
Lisa (mother of Maddy and Thomas): Maddy is 10. Maddy is a beautiful kid. She’s pure. Asperger kids can’t lie. If you’re at a party and somebody’s hurt, just go straight to Maddy and Maddy will tell you exactly what’s happened.
Michelle: Ella has Asperger’s. The impact can be quite severe. She has a lot of sensory overload issues which can lead to meltdowns.
Lisa: Her biggest struggles, I guess, would be her anxiety. It’s really high which then causes obsessions. The support I received prior NDIS was HCWA funding (HCWA = Helping Children with Autism). You get $7000 a year and $2100 of that you can use for resources. Once we started school, our HCWA funding was finished, you’re self-funding, you’re paying yourself, so I would say the biggest impact is you’re probably not doing as much as you should be, or able to do as many sessions as you could be doing because of the money.
Michelle: The transition from HCWA to NDIS was very simple. Once you’re in the system, the NDIS is a lot more streamlined than HCWA to maintain and to use as an ongoing system.
Lisa: So what happens when you first have an engagement with NDIS is you get sent a letter and some forms to fill out, which I did, and then was allocated a planner. She asked me a little bit about Maddy, how old she was, what she’d need.
Michelle: What we really love about the meeting process with the planner is just being able to get that change to sit down with someone who’s impartial to your child and isn’t really bogged down in the day-to-day therapies and what you’re doing, and is able to give a little bit of an outsider’s view on how they see things.
Getting started with the NDIS?
Lisa: Some of the perceived barriers out there for parents are, I suppose, finding it stressful. I’ve heard some parents say, feeling like they’re going through a whole diagnosis again, not knowing what they can go in there and ask for. I remember that being quite stressful, obviously, you know you want speech pathology, you want occupational therapy, you want psychology, but you had no idea that there was recreational funding and respite services.
Tips for parents starting with the NDIS
David (father of Ella and Penny): The number one thing going in to see the NDIS would be to go in with some sort of an idea of what you want, a goal, what you want to achieve, what support you want for your child, and be able to articulate it, I suppose.
Michelle: If possible, I would say to talk to other people who are already a part of the NDIS, get some information about how they found their first planning session.
Lisa: Ask other parents out there what’s on their plans before going in to the meeting. I suppose at the end of the day though, it is all about your child, what your child needs, you know them better than anybody, you know what they need. So have that list in your head, where you want to go and what’s the outcome for your child at that end of the year, where do you want to be with your child, and that will give you the answers for the other things, I think.
Michelle: The NDIS is a more personal plan. It caters more to the individual child rather than the children as a whole, and especially for autism spectrum disorder, it is a spectrum and every child is very different, so it’s nice to have that real individual-ness about it.
Lisa: For me, the advice is to definitely persist and get through that first planning session research, get to know the system because what the outcome is for your kids, you can do so many more therapies, it helps monetary, it takes that pressure off the family. So I definitely say, persist through it and it’s well worth it.