Nicole Telfer (she/her, disability and inclusion practitioner): Once your child has an NDIS plan, it's worthwhile to spend some time understanding it. So, looking at things like how much funding is available and how you can spend that funding, things like how the plan is managed and how the bills are going to be paid. By getting your head around all of that stuff, you’ll really be able to make the most out of your child’s plan.
Dee (parent of Max and Oscar): So to be empowered with yours or your child’s NDIS plan, you have to know what’s in it, first and foremost. You have to know what your funding – what you’ve been funded for and what you can use that funding for. If you don’t understand what’s in that document, keep asking questions. So I think it's educating yourself on what each part of funding’s for and how you can use it. That's going to vary depending on whether or not you are self-managed, plan-managed, NDIA-managed, and what it is you're actually trying to do.
Caz (parent of Sam): For me, self-managing has been very successful. And I’ve been able to quite easily redirect funds to where the identified needs was at the time. I think plan-managed or NDIA-managed probably doesn't give you the same level of flexibility. But I know, certainly, some of my friends from school, they will do plan-managed because they're working full-time, they're raising several kids, there’s so much going on that the administrative side of the requirements of NDIS is actually just more work for them. So, to have a plan manager manage the administrative side has actually worked quite well. And it's also helped to actually identify services that people may not have thought of.
Jax Brown, OAM (they/them, LGBTIQA+ disability educator): So one of the ways that I feel like people can try and be empowered in their NDIS plan is by having that support around them to do some of the additional work before you step into that meeting. So, really thinking about what are your goals, what are the equipment or supports that you might need around you to achieve those goals. Getting some of that written down and clear in terms of being able to utilise some of the language that the NDIS utilises around some of those stuff, and feeling like you've got someone in the room with you who is your advocate, who is your ally in that space to really assist you when you might get a bit flustered or overwhelmed. Because it is quite an intense meeting to be in. A lot runs on it.
Nicole Telfer: Every child’s needs are different, and every child’s plan is going to be different. But there is still value in connecting with other parents who might have a child with an NDIS plan to find different strategies around how you might implement a plan, or different ways of seeking out services. There’s a lot that other parents might have to offer.
Dee: For me as a self-manager, I always come back to the self-management guide. There is a list of questions that if I can answer them properly, I can say, ‘Yes, this is an appropriate way for me spend that portion of my child’s plan.’ Again, it comes back to knowing your plan. Because even if you're self-managed, there can be stated supports in there. So it might say I have to use a portion of money on speech therapy. And that money is then almost earmarked for speech therapy. If it's not set out as a stated support and it's just a capacity building fund, then as a self-managed participant, I can use that money however I best feel it will help Max reach his goals.
Caz: So one of the things that I would encourage is that you talk about your own needs as well. It’s quite easy as a parent to identify the needs of your child and advocate for those needs to be met. And I think as a parent of a child with a disability, you often forget about your own needs because they just – the other needs are so high that they have to be met first. But I’ve found over time that if I do include things about my own needs within his NDIS reviews, we often get a better outcome.
Dee: Whenever you speak to the NDIS, I always recommend and I always do get a receipt for the conversation. So they can give you a reference number. And I also think it's really important to every now and again just check in on what information they do hold on you. It’s sometimes good to do this around plan renewal time. So in preparation for your next plan review meeting, you might ask for the participant information that they already hold on you so you can fill in any gaps.
I think when thinking about applying for the NDIS, the first thing I’d say is figure out the basis on which you're applying. Think about what your primary disability is and think about what the impact that that disability has on how you or your child, if you're applying on behalf of your child, the impact that has on their day-to-day functioning. Because that’s what the NDIS want you to show. The more you know about how they can help you, the more likely you're going to be to get through that initial application process.
I think the other thing I would say to parents is if you get knocked back the first time, don’t walk away. Reach out to advocacy organisations in particular that specialise or have knowledge of the disability that you are applying for.