Imagine you’re in the hospital with your new baby. You may have found out they’ve got down syndrome either during or after pregnancy. (Despite advanced technology and testing, some people still don’t find out until their baby is born). So, you’ve got your baby, then suddenly someone comes to you with a big booklet and tells you your child is eligible for NDIS. Whether you know what the NDIS is or not, you would likely have a bunch of questions that you would want answers for. Yes, perhaps they are there in that booklet that you’ve just been given but, you’re exhausted from having a baby perhaps only a day or so ago, your awake time is spent looking after your new baby, and when they are asleep so are you. Do you have time to read through pages and pages of information? Probably not. You want to ask your few questions and then you’ll get the rest of the information from the book. But that person that gave you the book knows no more than you and regardless of whether they know the answers or not, they may not have time to answer your questions. Sounds a little scary right? I’m pretty certain that’s how it happens a lot of the time. Ben and I remember being given the booklet in a brief encounter with someone at the hospital, but we don’t remember if it was the nurses or social worker, that’s how brief the encounter was. We were lucky though, with Ben working in disability, he was very aware of the NDIS. He understood what it was and how it worked to a certain extent, (I’m not sure anyone completely understands it). If we were new parents, without any prior knowledge of the NDIS, disability services, or anything like that, it could have been extremely daunting.

For those who don’t know what the NDIS is, it is the national disability insurance scheme. The purpose of the NDIS is to help ensure those that need it to get the therapies and assistance they need with the help of funding from the government. It helps reduce the financial strain on the families and carers and creates a better life for those living with a disability. The NDIS can cover things like physiotherapy, speech therapy, occupational therapy, and even psychology for some.

So basically, we were given this booklet in the hospital and told we needed to start looking into it as soon as possible. No real explanation was given, no one really sat to talk to us about it. Life had just changed with the fact that we’d brought two new babies into the world, we were still coming to terms with the fact that we didn’t really know what the future looked like for us with Hope and we had so many other health issues we were dealing with. To just be given this booklet and told to look into it, it was quite confronting. It was like we were suddenly pushed into thinking about all the therapies we were going to need before we even had a chance to stop and enjoy the newest additions to our family. It was hard, there’s no other way to put it. All the fears we felt when we first got the diagnosis came back but now they were real. All the extra therapies, the appointments we thought we may need, the fear that life was going to become so busy and we wouldn’t know how to make it all work. All these thoughts came back and we didn’t know what do to with them.

So what did we do? We left it for a while. We were going through so much at the time. Hope was still in hospital, we didn’t know for how long, we had Alexander to think about as well, we just wanted to take it one step at a time. So yes, we did contact someone fairly quickly and they told us there could be a bit of a wait before someone would be able to see us, but we were in no rush. With Hope’s heart issue, we weren’t going to do much in terms of therapies for a while. We needed to make sure she was ready before we started. It’s always good to start with the early intervention therapies as early as possible but you need to consider what is right for you, your family, and your child. There’s no harm in waiting for a few months while you get everything in order. Enjoy your life with your newborn.

When we were ready we had to meet with an early childhood intervention coordinator and we discussed everything to do with Hope. She was asking things like what she was able to do, what goals we had for her, what we expected she would need help with and goodness knows what else. All Hope could do at the time was lay on her back, our goal was to get her off her back and moving more. We didn’t know what the usual age for reaching milestones was so we didn’t know what kind of goals to make. The age range for reaching milestones when you have Down syndrome is quite large, which we didn’t realise at the time, but obviously, that adds even more difficulty when making goals. Obviously, you want to have goals that are achievable but not too simple. Challenging, but not impossible. That’s hard to do as an adult, never mind trying to do that for a new baby.

So when we got our first NDIS package through, we did manage to get a fairly decent amount of funds which covered speech therapy, physiotherapy, occupational therapy, and a dietician, but until you begin using the funds, there’s no way to know whether it’s really enough. With our first year of having the NDIS funding, we only budgeted for one speech therapy session. Not long into the year, we realised we needed a second session to help with feeding issues. It wasn’t expected so we chewed through the budget a little faster than expected. There were also extra things that needed to be bought which generally would’ve been covered but weren’t as we didn’t know we would need them. This included things like supportive shoes, leg/arm braces, mats for physiotherapy, and thickener for Hope’s milk. For some of the larger items, I believe you can request extra funding, there’s no guarantee it will be approved. Any time you request funds for something different, you need to have reasons and documents from the therapists to explain why. I leave everything up to Ben so I really don’t understand how it all works.

One thing I didn’t mention is that when you start with the NDIS you have the option of self-managing your funds which basically means you are in control of where the money goes. You make payments to the provider and then request a refund from your allocated NDIS funds. If you have no idea what you’re doing and don’t want to manage your own account, you can choose to have a plan-managed fund. While this may make some things slightly easier it does come with restrictions. With a plan-managed fund, you don’t have the ability to choose any provider you want. There are specific providers you can choose from which can be tricky if you’re not from an area with a large number of providers. For us, we’re not living in a hugely built-up area, we’re not in the middle of the city, we don’t have multiple OT’s or physiotherapists around. If we were plan managed, we could be spending a decent amount of time traveling to therapies.

What is the aim of this post? I guess, I really just want people to know that the NDIS is there to help but it’s not as easy as just signing a form and saying ‘yes, help me with some funding’. There’s a lot involved in it, a lot of thought and a lot of guessing (predicting the future). It’s not a perfect system, but nothing is. The good thing is we can get help when we need it. Without it, Ben and I will be selling a house we don’t have, to ensure hope would be able to get the therapies that she needs. Without it, we’d be eating noodles for dinner every night to ensure Hope gets the help she needs. Without it, I would be working crazy hours and spending very little time with the kids to make sure we could earn enough money to give Hope a small chance of an improved future. The NDIS doesn’t cover everything. All those little extra health issues are not covered but it helps with the ongoing therapies. It’s going to help make sure that one day Hope is walking. It’s going to make sure that one day Hope is able to communicate. It’s going to allow Hope to grow up and have more awareness of the world and allows us to give her the best future possible. While it may feel like we have to jump through hoops and even predict the future… having it makes the impossible, more possible.