Understanding the NDIS: An Honest Guide for Parents and Carers

Hello beautiful human! My name is James, and I’m the Head Problem Solver at RippleAbility (yes, that is my official title). As part of my role, I help solve problems in the background for our team to ensure we can continue supporting our families with grace and ease. This year though, I wanted to give back to our families and their children and offer my free insight on all things NDIS to you, and anyone you think could benefit. So pour yourself a cup of tea, or coffee as my preference, (or even a glass of wine!) and join me in the first edition of the RippleFamily Survival Guide (because some days it certainly feels like we need one).

And what better place to start than right from ground zero? In today’s entry into the survival guide, I want to provide you with a clear and comprehensive understanding of the NDIS, including what it is, who it supports, and how to access it. And if, by the end, you're still confused, I have some valuable tips on going forward.

(image description): James (our head problem solver) working at his laptop smiling at camera with baby Kelly sitting on his lap

The Dawn of the NDIS. What even is it?

It all began in 2013, when the Australian federal government decided, “Hey, maybe we would have a more fair and equitable country if we took it upon ourselves to actually support people living with disabilities”. And so the NDIS was born. This started the growth of the scheme we now see rolled out across the whole nation. A government-funded scheme that provides support for individuals with disabilities, including children.

Its purpose? To provide funding for necessary services and equipment to help individuals with disabilities live independent and fulfilling lives. And while its history is laden with minor hiccups and colossal f*ck ups big mistakes, it is still, to this day, an excellent scheme (at least, in my opinion). Because in all the research and consulting I’ve done on the scheme, I’ve yet to see a model anywhere else in the world I’d rather have.

So who is the NDIS for?

But of course, to access the NDIS, the individual seeking support must meet the twisty and sometimes vague eligibility criteria. In addition to being under the age of 65 and an Australian living in Australia, to access the NDIS, an individual must have a permanent and significant disability or impairment that affects their ability to participate in everyday activities. Seems simple right? But the reason I say it can be tricky is that “permanent and significant disability or impairment” has a great deal of interpretations in the offices of the NDIS and, indeed, in the medical world. In some cases, what seems clear to you, as the parent or carer, as “significant” may not be recognised by the NDIS. And its times like these, you may need to jump through a few extra hurdles to get access. This was certainly the experience of our founder Monique with her daughter (being knocked back a staggering 3 times despite her serious life-limiting disability).

But don’t let stories like this dishearten you. Because even though it was a hard fought battle, it was worth it. And countless times, when I speak to families with similar stories, the sentiment is the same. The therapy and support Emmilou has had access to as a result of her NDIS plan has been life changing, and was worth the effort of haggling with the NDIS, ten-fold.

How do I access the NDIS?

Now, as far as getting started, it can be overwhelming, especially if you are a parent or caregiver of a child with a disability and already spinning a dozen plates while juggling the already crazy life of being responsible for your mini-human. So in this guide, I wanted to provide a straightforward step-by-step process for accessing the NDIS:

1. Contact an agent* of the NDIS and complete an access request.

   • If your child is under 7 years old, you’ll need to be speaking to an Early Childhood Partner of the NDIS. Remember, if your child is under 7, you DO NOT NEED A FORMAL DIAGNOSIS OF A DISABILITY. A diagnosis of Global Developmental Delay from a GP will get you started.

   • If your child is 7 or older, you need to speak to your Local Area Coordinator.

   • You can use this tool to find your local Early Childhood Partner of Local Area Coordinator.

   • When you contact them, you’ll need to provide information about your child’s disability and how it affects their ability to participate in everyday activities.

2. Once your access request is approved, the negotiations on your childs plan can start. An NDIS planner will work with you to develop a support plan tailored to your child’s needs. But don’t be mistaken; even though the NDIS frames these plan meetings as a collaborative space for discussion and good banter, they’re really a negotiation. And we’re speaking from experience when we say, planners are there to offer as little funding as they can reasonably get away with. This is why it’s important for you to clearly goal set for your child because this support plan will be tailored around those goals and what your child needs to achieve them. Think good goals = good support.

3. You’ll get a support plan! Congratulations! This plan will outline the types of services and equipment that are funded by the NDIS, and how much funding you will receive for your child. I’ll talk about how the support budgets are broken up in a later post. In many cases this support plan will stay in place for a year (sometimes longer, sometimes shorter depending on your circumstances).

4. Start utilising your plan. Once the support plan is in place, you can begin accessing the services and equipment that have been approved. If you’ve been fortunate enough to be allocated a budget for a support coordinator, you may want to reach out to one as they will be able to help you get started.

If any of this is sounding overwhelming or your feeling a bit defeated, it is important to note that, despite its best intentions, the NDIS is a highly complex government system laden with obstructive jargon, and the process of accessing it can vary depending on individual circumstances. This was why RippleAbility was originally established. To help parents and careers access the NDIS for their children. We provide one-on-one consulting tailored to your unique struggles with getting access for your child (from getting the right reports and diagnoses to goal setting and even advocating in your plan meeting to ensure planners are giving you and your child what they deserve).

If you need a hand, reach out. We’re here to catch you when you need it.