NDIS Know-how podcast

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special, and powered by Hireup, a disability support platform connecting families like mine with top-notch support workers. 

For this episode I’m chatting with Stacey Touma and Bree Pennie, both of whom have kids on the NDIS, and both of whom work for a wonderful organisation called Kindred that supports families raising kids with disabilities. 

Stacey lives in Brisbane with her husband, Mark, and their three children including Alex, who’s 10, and has a rare genetic condition called Williams Syndrome and intellectual disability. Bree lives on the south coast of NSW with her partner, Mitch, her daughter Dylan, who’s nine, and her seven-year-old son, Dax, who was born with Congenital Cytomegalovirus (CMV), and has physical disability. 

In this conversation we cover parent and carer wellbeing, and the relatively unknown concept of capacity building for parents of kids on the scheme. To kick things off, I ask Bree and Stacey, why are they so passionate about supporting families of kids with disabilities, in a really holistic sense, to which Bree replies: 

Bree: I mean, I guess it comes back to that concept, like that self-care is giving the world the best of you instead of what's left of you. And I think for me personally, I was burnt out. I had that therapy burnt out, burn out very early on. And it was affecting our family well being. You know, my daughter was getting dropped off to family and friends every time we'd go to a therapy appointment. My relationship with Mitch, you know, it was going OK, but it wasn't great. So I think when we recognised that we needed to look at our family as a whole and try and find that balance, there was a big shift in the whole family's well-being, but that actually reflected in Dax as well. 

So we cut back on therapy a little bit, and that was when we really looked at ways to build our capacity to support him, particularly since we moved regionally as well. So there's a lot of travel that comes with appointments. So by looking at how we can best support him and our family, we've definitely cut back on a lot of that. And we spend more time together as a family. We do more fun things. Our relationships together are better. Dylan and Dax's relationship is amazing and at the moment. 

But yeah, I think as well for me, doing the Healthy Mothers Healthy Families Programme was quite eye opening as well. 

Melanie V/O: Just jumping in here to let you know that Healthy Mothers Healthy Families is a free online program run by Kindred, designed to support and empower mothers of children with disabilities to create a healthy lifestyle for their whole family. You can find a link to this program in the show notes.  

Bree: It's quite eye opening, particularly when you learn about the statistics around the health of mothers. And I mean, I guess we all know as well the relationship breakdowns in parenting children with disability, and that rate is high. So for me, I think it was really important for us as a family to acknowledge those challenges and to put a little bit more focus on them. And that did take a little bit of a shift away from Dex's therapy, but it's really helped us [00:09:22][64.4]

Melanie: Yep, better for the whole family. I love it. Stacey, I know your body was sort of falling apart at one stage. What's been your sort of parent health and wellbeing experience? 

Stacey: Yeah, absolutely. I think, you know, I reflect back like Alex is 10 now, and I reflect back from those early days of being that parent driving all over Sydney for what we thought was the best therapist, and our life revolved around that. And like Bree, just was heading for care and burnout, and we did that for about three years and I started to have my own health issues. 

And, you know, they were quite significant to begin with, and it was something like we were seeing specialists to kind of see what was happening. And even as I was going through that, like, I can't tell you how many years it actually took me to follow up with my rheumatologist. And it was because my reason I would say to myself was, I am so busy going to appointments and things for Alex. I just don't want another appointment. 

But, you know, the implication is that I wasn't in a good enough place to be able to support him, and it was the healthy mothers programme that actually just changed my perspective on placing value on my own well-being. And that concept of caring for yourself and the oxygen mask, and that allows you to be a better parent to all kids, not just not just Alex who has a disability. 

**Middle music**

[Melanie V/O] Much like parent and carer wellbeing, capacity building for parents of kids on the scheme is not something we talk about in relation to the NDIS. We talk about capacity building for our children. So I ask Bree and Stacey, what does capacity building for parents mean - and what can it look like?  

Stacey: Yeah, I think when I think of capacity building and as an employee, we are always building our own skills and, you know, undergoing professional development so we can do our jobs better. So I think whether your child has a disability or not, we often don't place the importance on building our own skills to be able to parent.

So capacity building is just everything that you do that builds your own skills. So it could be parent education courses, going along and hearing a webinar. It could be workshops. 

Bree: I think a lot of it is parent coaching as well. So it's something that didn't sit well with me in the beginning. I was kind of like, Oh no, I can't have a session with myself. I've got to have that session for Dax. He needs that one hour therapy because that's going to make the difference to his whole outcome. And once you realise that that one hour of therapy, it's amazing. But the best thing that I found by using those therapy sessions was to coach me because at the end of the day, it came down to what I was doing at home with Dax. 

Melanie: When you say parent coaching, Bree, because when you're saying it, I'm thinking, Well, we've gone to every one of Arlo's physio, OT, speech, we help with the appointments we watched. Is parent coaching different to that? Is it just you and the therapist, and like the kid isn't there, or how does it work?

Bree: So quite often it'll be me going along to a session, or I might bring Dax's support worker along to the session to record it with the therapist and doing particularly some of his movements. But then often as well, like we're going through communication trials, so there will be sessions just with me, and they might be three times a week where I'm going through a communication device and learning how to add things into it, to take things out of it. I'm recording Dax, and then I'm sitting there and I'm talking through it with his speech therapist, so I think it can look like both. 

Melanie: That's so cool. And again, we do not talk about parent coaching. This is the first I've heard of it, Stacey. Tell me how you guys how you've done parent coaching in your family. 

Stacey: It is exactly what you said before. It's just about being present in a therapy session. So it's just, I guess, rethinking what a therapy session is and the objective of the therapy session is for you to learn the skills that you can take out into your everyday life.

Because a therapist is there once one hour a week, one hour a fortnight, whatever it might be, but you're the one that's there with a child the most. And therapy and parent coaching is about building your skills so that you can then support your child in your everyday routines and, you know, in the everyday activities of family life. 

So parent coaching has transformed the way we support Alex. And something that I love my husband said to me a few years ago, like, 'I haven't seen you doing any therapy with Alex', because I'm the one that goes along to every therapy session. And I said, I actually am in everything that I do, like every conversation we have, every time we're driving in the car. That's because I have been coached on how to build my capacity to be able to implement those therapies. The therapy strategies in our everyday life.

But I think when you find a therapist that does parent coaching really well, it just transforms the way you support your child. It doesn't feel like you're kind of having to schedule time for therapy. [00:17:45][9.8]

Melanie: That's good. 

Bree: Just like you said Stacey. Schedule time for therapy. I remember I used to actually put in my diary an hour every day where I had to do an hour of therapy and it didn't work. Dax hated it and we built it like that incidental therapy. When he looked like he wanted to stand up, we were able to jump in there and put him in the right position. And then it just became part of daily life. Like you say, like you just incorporate it wherever you can and doesn't feel like therapy 

Melanie: That's taking the lead from your child as well, which is so it's so much better. It means that they get to decide more about what their day looks like. Yes, I feel like standing up now. No, I don't feel like standing up during the allotted hour that you've given me. Yes. So yeah, 

Stacey: Absolutely. I think another really important part of that capacity building is about what you do without your child. And I think, you know your parent education and workshops programmes are so valuable at building your skills. And I think one of Alex's goals that we've been working on for a while around emotional regulation, and we have worked with this therapist on it, but we also went along to a course which the objective was around emotional regulation. It was tuning into kids. And the strategies that I learnt from that course were so helpful in helping me to understand what that is and what are the strategies that I can use in our everyday life. 

So while I think, you know, capacity-building with your therapy team is so important. There is a lot you can do in the community with other families. Parenting courses that are equally as valuable as therapy sessions.

You can use your capacity building funds to pay for building your own capacity as a carer. It is the therapy funding bucket, but it's something that if you really need to consider your plan management options because if you are self-managed or plan managed, you do have that flexibility that you can dip into that funding bucket to build your own skills. 

Melanie: I think you can absolutely justify the need for these kinds of supports coming out of the therapy bucket. What are some ways that we can get this kind of support without spending money on it? Are there free resources out there that you can recommend? 

Stacey: There are so many free resources out there. I think families connecting with other families, learning from other families, experiences, whether families are at the same stage as you or if they're further along. There is just so much that we can learn from their experiences. And I think connecting with families, whether it's through online communities, in local groups, I think families are a valuable resource.

Bree: So I think it's about asking and just, you know, keeping your ear open like families are so willing to share information. It's such a wonderful community in how much families of children with disability support each other and lift each other up and want the best outcomes for all of our children. 

[Melanie V/O] : Thank you to Bree and Stacey for this very helpful chat, and also to Hireup, for supporting me in making this podcast.  

If you want to learn more about how to get the most out of your kid’s NDIS plan, why not come along to Hireup’s Navigating the NDIS webinar series on the first Tuesday of each month. To register, check out hireup.com.au/events. 

Thanks for tuning in to NDIS-Know how, I’ll catch you again soon.  

** Outro music **

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability support platform connecting families like mine with top-notch support workers. 

This episode is a bit of a special one and it's very timely, as it specifically relates to Australia’s upcoming federal election on May 21. My guest for this one is disability rights campaigner Elly Desmarchelier, who is a spokesperson for Every Australian Counts, and their Defend our NDIS Campaign.  

Elly lives in Brisbane with her wife Chantele and their two dogs. She’s been all over the media lately, hosting numerous events campaigning for the future of the NDIS and, as she says, finding new and exciting ways to get the NDIS on to the election agenda. 

In this chat we talk about Ellys own experience on the NDIS, why the NDIS needs defending, and ways that we can educate ourselves on making our vote count toward a better NDIS.    

Melanie: Elly, you are an NDIS participant yourself. Can you tell me a little bit about how the NDIS came into your life and the impact that it's had? [00:01:33][7.0]

Elly: I had an incredible first planning meeting. I remember going into the office and meeting the planner and sitting down with them. I took my mum, who's an incredible advocate, not just because she's my mum and I think mums of disabled kids are the best advocates you can ever find. But she has been instrumental in the roll out of the NDIS here in Queensland. But it was a dream planning meeting. It went for about an hour and a half and this woman showed real interest in my life and what I wanted to do in the future. And she was shocked that I had never received any support in my entire life and that I had achieved what I had with nothing but that she could see I was in real pain without support. 

So she went off and she was the one that wrote my first plan. And I think it was only a week or so later that that first plan hit my inbox. Weirdly, I was visiting my mum at work and it was her work team that was very much responsible for the rollout of the NDIS in Queensland. So it was very exciting to be with them when I opened my first NDIS plan and 

And yeah, it was. I have referred to that day throughout this whole campaign as my freedom day and in particular that first NDIS funded wheelchair was the most transformative, I guess the material item I have ever arranged in my life to be given that wheelchair meant that I could go to work full time. It meant that I could go out to the shops with Chantelle and push myself around for the first time and not rely on other people to get me around. It was just freedom. It was complete freedom. 

Melanie: That must have been such an incredible and life changing moment. And it just blows my mind that prior to the NDIS you were using a wheelchair that you bought at Aldi. Is that right?

Elly: That's right. I remember. So I had been using one of those walkers that you buy at the pharmacy, and I had been persevering with that, I reckon, for about five years. And I remember I was with one of my really good friends and oftentimes what I would actually do is sit on the seat backwards on these walkers and everyone would push me around on the mobility walker. So it was like a fake wheelchair anyway. And we were going to Aldi and we were looking and you know, the great special buys section, those random things that come up, you know, yes, you can buy like winter items and then somewhere you could buy like a lawn mower. Yeah. And then suddenly you could buy a wheelchair. 

But it was so wrong for me. My feet didn't touch the foot plates. I couldn't manually push it myself, which meant only other people could push me around. It was just built clearly for it, like a full size adult male. 

And yeah, I just looked like I had shrunk inside this wheelchair and it was so uncomfortable, but yet it was better than sitting backwards on the mobility walker. So you kind of took it? Yeah, that's what we that's what we ended up doing back in those days. You just kind of made do with what you could because you had nothing. 

Melanie:Gosh, it's just. Yeah, like I said, it blows my mind because Arlo’s wheelchair, my son, and the amount of trials and tailoring… His wheelchair is so custom made for him. And he can't sit in, you know, standard wheelchairs like the ones they had at the airport and the beach and stuff like that. So we would have been completely screwed prior to the NDIS, probably having to carry Arlo around. I don't even want to imagine what that would have been like… 

Elly: Well, can I just say my memory of childhood was that my mum would carry me around right up until I was about six or seven. My mum, who's tiny and who had broken her back as a teenager in multiple places in a really bad car accident, she had no other option than to. I remember being at supermarkets and shopping centres and saying Mum legs or legs or carry and she would pick me up and carry me because there were no other options. 

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[Melanie V/O] As you just heard, Elly’s experience with the NDIS has been good, but we know this isn’t the case for all participants. I ask Elly, why does the NDIS need defending in this upcoming election? And why is it in trouble?

Elly: The reason it is in trouble is not because any political party has threatened its funding. Let me be clear. Both major parties have guaranteed funding the NDIS into the future. Where the NDIS is in significant trouble is in its values and in its purpose and in its fundamental promise to people with disability. 

So to explain this Mel, I really do need to take you back ten years, ten years pretty much exactly to this moment when Julia Gillard announced that she was creating the NDIS ten years ago this week and that came off the back of years and years of campaigning by people with disability, including Every Australian Counts, which was created in order to fight for the NDIS. And we fought to create a national disability insurance scheme that would provide people with disability, not with welfare checks, not with standardised packages, but with an insurance scheme that would guarantee them for the whole of their entire life and the individual packages they need to get the supports they need for their individual disabilities to in order to achieve the life they want to live of their choosing.

Because I think the thing you really need to remember is that disability is so diverse. There is no two people even with the same disability that has the same support needs or the same allied health status. You cannot get people with disability into standardised boxes. So we fought for an NDIS that would recognise those individual needs and that is the NDIS that was created and that was the NDIS that absolutely delivered my first plan, you know, to sit down with that plan and for an hour and a half and for her to understand my life and my goals, that was, that was delivering on its promise.

But over the last 18 months, what we've seen is an NDIS that is being whittled down into a standardised welfare scheme where they are attempting in order to save costs, to fit people with disability into standardised boxes. And as a result of that, what people with disability are experiencing is massive cuts to their NDIS plans and when they appeal those cuts, what they are experiencing is a NDIA that will not talk to them and therefore they're having to go to that state, which is a disastrous, heartbreaking experience. [00:14:33][46.0]

So when I say we need to defend our NDIS, I'm not talking about the NDIS of today. I am talking about the NDIS we built ten years ago. We need to get our NDIS back and we need to deliver on that promise that we made to people with disability ten years ago, that the NDIS was always going to be there for them. [00:15:02][27.8]

Melanie: We're going to go and vote in the federal election in a few weeks. So when we're deciding how we vote, how can we educate ourselves on who to vote for, you know, how are we going to vote so that our vote counts toward supporting the NDIS? 

Elly: I think that's a really great question now. I think the best way that you can educate yourself is to reach out to your local candidates. And I know that feels really intimidating to a lot of people, but I think sometimes we think that it's all about what the leaders at the top have to say. And we leave it to, you know, the party leaders to give us all the answers. But I actually think we need to remember that it is the people in our electorate who are going to represent us that we really need to hear from. 

So I recommend that you go to the Australian Electoral Commission website and you find out what electorate you're in and they will also tell you now who is running in your electorate. Google then have a look at what they stand for and if they don't have anything out about the NDIS, just send them a quick email and ask them to email you back what they believe about the NDIS. 

And then I've had a few people come back to me and say I've gotten this response and you know, I just. It doesn't really answer my question or I'm confused by it or, you know, it's a lot of technical speak. And often what I say to those people is, well, if you feel like it doesn't answer your question and it doesn't speak to what you were telling them about your life, then I think that that says a lot about whether that candidate is best to represent you. But if you truly feel like they may have just misunderstood you, go back and ask for some more. 

But I do think a lot of the time that it is good to talk to these people about the NDIS and understand whether they really, truly get what it's like to be on the scheme. 

At a broad level. I can just let you know that. So we in Australia have two parties that can form government, the Liberal Party and the Labour Party, and we have the Greens that are a minor party that often have seats in the Lower House and in the Senate. Labour has released its NDIS plan for the future. The Greens have released its NDIS plan for the future. We have not heard from the Liberals a plan for the future and we have two weeks to go. 

And I think that's been a really disappointing part of this election campaign because when you have two parties that can form government, I think it's really important that both parties lay out their futures for the NDIS and then we can compare. So I really hope in the last two weeks of this campaign my biggest hope is that the Liberal Party releases its plan for the future of the NDIS because then people with disability can truly compare and contrast and make the best decision for them. 

Melanie: Yes. Then we'll have all the information in front of us that we need. 

Elly: Yes. I think it's just really important, Mel, that people with disability and their family and their friends understand that they have a lot of power at this election. There are 500,000 people on the NDIS. There are 270,000 people whose jobs directly rely on the NDIS. That's a lot of people. And then when you add on top our family, our friends, all the people that care about us, that's a lot of votes. So if we can get chatting to our friends and family about why the NDIS matters to us and why we need to defend it, we can change the course of this election and I want to make really clear to people with disability. 

The future of the NDIS has not been written but I want to make sure we are the ones that write it and if we are the ones that run it, we need to show up at this election and showing up means talking to our friends and family and it means voting on May 21st. 

Melanie: Yes. I'm so excited to have you in this community doing this incredible work for us. Thank you so much. 

Elly: Right back at you, thanks Mel, talk soon! 

[Melanie V/O] : A huge thank you to Elly for sharing her story and wisdom, and also to my sponsor, Hireup, for supporting me in making this podcast.  

If you want to learn more about how you can defend our NDIS in the upcoming election, visit the Every Australian Counts website, which I’ve linked in the show notes.  

Thanks for tuning in to NDIS-Know how, and catch you again soon.  

** Outro music **

** Intro music **

Melanie V/O: Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability support platform connecting families like mine with top-notch support workers. 

In this episode I chat with Heather Cox, a Sydney-based marketing professional and mother of two daughters. Her youngest, six year old Arianna, has Sotos syndrome, a rare genetic condition characterised by overgrowth and delayed development.

Heather: We didn't have a diagnosis until she was about 20 months. So during that time we had to sort of beg, borrow and steal whatever therapy we could get our hands on - free group sessions and things like that. So we're very happy that the NDIS came into our life by the time she was about one so that we could give her the early intervention that she needed.

Melanie: Yeah, you and me both. I think we were super lucky that our kids were born in 2016, when the NDIS started rolling out. That was extremely fortunate timing.

Heather: I know! 

Melanie: The NDIS is here and it's wonderful that it's available to us, but it's not perfect. A lot of parents have struggled to get the funds and the supports they need through it. What struggles have you encountered with the NDIS, if any, during Ari's time as a participant so far? 

Heather: I think initially it was overwhelming because I was so new to it, there's so much language around the NDIS just get your head around. And I think in those early days we were trying to get our heads around so many new words and language. If you haven't been touched by disability in your life beforehand, you know what's hypotonia? What's cerebral palsy? You know, x y z syndrome, you know? And it's just another lot of words and language that we need to get our head around. So I think initially that was quite overwhelming.  

I was very fortunate to be in touch with some beautiful organisations like Plumtree, which really helped me to navigate some of those things, and I attended a lot of workshops. But I think, you know, I really had to upskill myself in order to feel confident that I could advocate for my daughter and get the best plan for her.  

Melanie V/O: The organisation Heather mentioned there was Plumtree, a Sydney-based not-for-profit that offers therapies and support for children with disabilities. It’s fantastic, as is its offshoot, Kindred, where you can get connected with a network of parents and free resources, like the Healthy Mothers Healthy Families program. You’ll find links to both of these organisations in the show notes.  

Heather: The other thing about the NDIS, I think, which can be overwhelming for parents, is that, NDIS is all about choice, and I think that's great, it's very empowering for us, but it's also a mental load then, to us, right? Because it's not like someone's just telling you, Okay, here's a child with a disability do X, Y and Z, you know that that's what you do. It's actually you're not really pulled down a path of this is what you have to do. It's actually within you. So again, it all comes down to us empowering ourselves and upskilling ourselves so that we can then make those decisions for our child as to what is actually going to be the best for them.  

Probably getting organised is one of the biggest challenges, not spending more than you're given. I was caught out the first, the first year when I ran out of cash toward the end. So that really taught me about better budgeting.

Melanie V/O: I ask Heather what she did that year, once she ran out of funds for Arianna’s therapies. It turns out she found a cunning way to bridge the gap between plans. 

Heather: And the other thing is that once I've run out, I've actually used, we've got private health, so I've used private health up to the limit that I could for Arianna. And I will say, you can actually go to your doctor and get a complex care plan, I think it's called. Talk to your GP and they can then give you access to, you get about five sessions funded with that through your GP of Medicare funded. You don't get the full amount back that you get. I think about 80 percent back. So that’s worth looking into as well if you run out of funds.  

Melanie VO/: Another thing I chat with Heather about is NDIS goal-setting, something she’s come to appreciate as a way to get focused on the year ahead.  

Heather: It's actually been quite positive in terms of forcing me to think about the next 12 months, what are my goals for my child? And if that structure wasn't in place, maybe I  wouldn't be so clear on what those are. So in a sense, even though it’s, you know, it forces you to do a lot more paperwork and admin and, you know, think clearly about what you want, it’s probably, overall, a good thing to go through the exercise anyway. 

**Middle music**

Melanie V/O: I dig deeper into the topic of goal-setting with Heather because she’s very good at it - and goals are the foundation of our kids’ NDIS plan. 

Heather: So we have goals for our daughter which are in fine motor, speech and gross motor, broadly speaking. But actually, with her gross motor, I meet those goals outside of therapy.  

So we do a lot of swimming with her through Rainbow club, which is a disability organisation supporting kids learning to swim and being safe in the water. And I also take her to playgrounds. And for her, once she was walking, that worked better actually than therapy, for her to meet those gross motor goals.  

So I still put those goals in my NDIS plan for the funding, but I actually use the funding to double down on my OT goals. So I have almost in a sense two OTs. I have one OT that focuses on her fine motor and sensory, and one OT that focuses more on life skills. Like she, she helped me with toilet training and bike riding…

So I've managed to, you know, be flexible with my funding. You get a bulk amount at the end of the day, and as a parent, it's up to you. You're empowered to use that funding as you need. So I would just recommend that parents don't need to stick to those strict guidelines around how many hours of sessions they can have.  [00:12:59][17.9]

Melanie:Yeah, I love that because you know what's best, you saw that Ari was getting more out of going to the playground and how great is that? Like, how much more fun is it to go to a playground, then go to therapy? I think that's great, and you've been able to do that because you're self managed. Is that a way of going about this that you would generally recommend parents do?  

Heather: Yes, I think so. I've actually been surprised at how straightforward it really is. And I think, you know, because I've never been anything else, I just went straight. Maybe again, this slight control freak-ness of me maybe. I wanted to self manage from the beginning. I was recommended to do so from organisations that I've spoken to. And, you know, I've found that works for me. 

The other thing I would add is that it's nice to have one big goal each year. So I think of my NDIS as almost like my 12 month plan, right? And there's like one big goal that I'll focus on. And then the rest of the goals get less focused. So in terms of my focus and hours. Because I find as a parent, if I think, you know, I'm trying to teach my daughter everything, it all becomes more overwhelming. Whereas if I just focus on, okay, right now my big goal is getting her to ride a bike with training wheels independently, then that's what I'll focus my energies on. And that's what I'll focus my funding on.  

My first year before the NDIS, I was getting my daughter fading because she was tube fed. The second year with getting my daughter walking. The third year was all about communication. And then from there, we probably moved into more sort of fine motor, toilet training, that kind of thing. So I think it's good to have just those focussed goals.

Melanie: I love that. That just simplifies everything. And I know you obviously have more than one goal for your NDIS. But if you are in your head like my head is the big one.  

Heather: Yeah, exactly. Exactly. Yeah, exactly.  

Melanie: I love that. I think that's really clever.

Melanie V/O: Heather is one of those parents who dives fearlessly, head first into the unknown and does her research. She’s incredibly well connected in the disability space and does work with Sotos Syndrome Australasia, an organisation raising awareness around this rare condition and advocating for families. I’ve also linked this one in the show notes.   

Before Heather and I wind up our chat, I ask her how she feels about the NDIS, as a whole, and how it has supported her family. 

Heather: The NDIS gives us hope, you know, and for the future, for our children. Because even if my daughter is not 100 percent independent on her own without support, I do have great faith that with the NDIS, that my daughter can be OK when my husband and I are no longer around.  

And I think that's a big fear of a lot of parents. It's, you know, you know, knowing that that possibly that, you know, she can have her own support as she needs it, just means that I can sleep at night, you know, and and I feel safe that you know, she's going to have the support that she needs. Wherever we get to with with her in terms of her independence.  

So I think for me, that's huge, and I just have so much respect for the advocates that came before us, who've really given us that… it's such a mental load off my shoulders, I think, knowing that the NDIS is there. And any time the NDIS is, maybe at risk, whatever, wherever the politics goes. You know, I feel really scared and worried, and I really want to keep fighting to keep it as strong and even stronger than it is today. 

Melanie V/O: A huge thank you to Heather for this insightful conversation, and also to my sponsor, Hireup, for supporting me in making this podcast.  

If you want to learn more about how to get the most out of your kid’s NDIS plan, why not come along to Hireup’s Navigating the NDIS webinar series on the first Tuesday of each month. 

 Bring your burning questions and join informative discussions with experts about the complexities of the NDIS including goal setting, plan reviews, funding and more. To register, check out hireup.com.au/events.

Thanks for tuning in to NDIS-Know how, I’ll catch you again soon. 

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Melanie V/O: Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

In this episode I chat with Sabikah Rizvi, a Newcastle-based mother of four boys. Here middle two, Abid and Taha, who are 10 and 8, both have cerebellar Hypoplasia and ataxic quadriplegic cerebral palsy, among other diagnoses. 

Sabikah: My husband’s a surgeon, so it's a pretty full on crazy lifestyle with the boys and him never being around. 

Melanie V/O: In this chat, we cover how Sabikah manages the colossal amount of admin and organisation that comes with having two kids on the NDIS, how she’s fought for better plans for them both - all the way to tribunals - and how she’s made time for her own mental health in amongst it all. 

Sabikah’s boys were part of the very first NDIS trials in the Hunter Valley region and, as such, she’s  a seasoned professional when it comes to navigating this thing. I start by asking her, what advice does she have for parents who are getting ready for their kid’s NDIS planning meeting?

Sabikah: Be very well prepared. Have all the reports ready beforehand, have your therapists write the recommended hours of therapy in those reports. Because of course, they're coming from a professional, if they are recommending those hours, then it has a weight in the report. Have all your codes, all your AT requests, all ready before the planning meeting. I would say also have a list of consumables, a budget that you require for the consumables, anything that you would want for the next full year as a low cost AT. 

I go into my meetings with stacks of reports, codes, AT requests, have recommended support hours as well. Have you therapists recommend those support hours if you require, or if your kids require support worker hours. If it's coming from a therapist, that that's the amount of support you need, it does have a weight in it. That's what works for us. Be as prepared as you can be. That's the best you could do. 

Melanie: Yep, definitely be organised. Am I right in thinking you've had some struggles with the NDIS and you've needed to do plan reviews?

Sabikah: Our biggest struggle with NDIS is… they don't recognise that early intervention and neuroplasticity works after seven years of age as well. That's one of our biggest struggles. I have to prove the significance of disability every year in the planning meetings. It's too difficult for a parent to prove that every year. 

It's very difficult for a parent to talk about it and they don't track the progress. We went for a plan review for Abid twice, once in 2019, and we were doing an intensive therapy at that time. So the internal review came as no, they're not going to approve whatever we were asking. We were asking for intensive therapies and more therapies hours, because that's what worked for my boys. And they said there was no proof of it. 

All evidence and reports were provided, but because we were in that intensive therapy block. I did not get the time to go ahead and pursue it further. So when they replied to it, saying, no, we can't do anything about it, I just left it. 

And it happened again in 2020. That's when I realised, now I have to do something about it. And then they refused again, it was then when I went to the tribunal. I had to go through the whole process of tribunal and everything, and in the end we received the funding that we wanted. We received everything that we asked for. 

Melanie: That's great. But you had to go through the absolute ringer. Yeah, you get there. What’s it like going to tribunal? What's that process like? 

Sabikah: Well, it's very difficult. You have to be very strong and you have to stick to your ground when you're doing that. And there will come times when... They will try to show that you're not right, and maybe you're over doing it. That's what happened with me. I was shown as if I was overdoing their therapies. 

A mum of four boys managing so many things, trying to have a life of my own as well, and doing two boys with therapy, there is no time for overdoing anything. And they made me doubt myself. And there were times when I though, I cannot do this. I maybe I am overdoing it, and maybe I... maybe this is not right. Maybe they're right. Maybe he doesn't need it. 

And there were times but I kept on, after every meeting, after every correspondence, I was I was doubting myself and thinking, maybe the boys really don't need that much therapy. But I stuck to my ground. I was like, No. I'm their best advocate. And you have to think like that. You are the best advocate. 

So yes, if you have to go towards that point where you have to go to the tribunal, you have to stick to your ground... You have to follow your instinct and believe that whatever you are doing is the best for your kid or yourself and have all evidence ready for it. 

So we had 12 reports, recommending those things, and we still had to do the tribunal. We still had to go through all that. And even then, they asked us to go to an independent paediatrician and have Abid assessed by him. He, of course, said the same thing all the other ones had said. He gave a good report and it was then that they agreed. And we got all the funding. But this has happened again with us.

The plan came out in August and our funding was cut down by two thirds. And we have everything booked in. We were supposed to do an intensive in September. And the plan had nothing, no funding left for it. So we are back to an internal review process for Taha now, and we're still waiting on the result. So let's see how that goes. 

Melanie: So you have to start from square one. Yeah, every single time, and this could potentially see you going to tribunal again. 

Sabikah: Yes. And that's torturous. It is. It is. Every time I have a meeting with the planner or the tribunal, it leaves me emotionally drained out. I'm mentally sitting and doubting myself every time. I'm thinking, I can't do this. And it takes me some time. 

Like when I received his planning. His plan with an email saying that, you know, everything's been cut down. And I was looking at that email, I cried. It took me three days to get over the fact and start fighting back again. But not every parent has that. Has courage or strength to fight back. 

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Melanie V/O: Like many parents of young kids, Sabikah self-manages her children’s NDIS funds. I find the administration this requires takes me a hell of a lot of time with just one kid, so I ask Sabikah, how does she do it with two? 

Sabikah: As soon as I get the plan, I divide everything like I sit down for a good few hours and I'll calculate all the weekly costs. And that's how I go about booking appointments and doing everything. That's the first couple of hours that I allocate. And then I look at all the funding that I have received. And that's how I do it. So I know from day one that this is how much I can spend in a week. So I never overspend. 

Melanie: Gosh, you're super, super organised.

Sabikah: I'm not actually. I don't have a spreadsheet. I have I have listened to people having spreadsheets and excel reports that I don't. I just have a system that works for me. I have a document in my Google Keep which knows that this is the weekly funding, and I don't have to do this more than this amount. 

I have all the appointments booked in on a yearly basis. I have some therapists who do term-wise appointments, but I know how much I can do. The invoices come and I receive those emails, yes, those emails are very organised. They have folders, they go in the folders, I have records of invoices. I'm never printing them. I'm not overdoing it because I don't have the time for it. 

And when I sit for invoicing, I don't do it on a weekly basis. I do it fortnightly or in three-weeks basis, and I have that one hour, two hour allocated and I'll sit down. I have the funding report in front of me and I have the payment. You know, the submission periodic the report so that I know what was the last date I submitted and how many invoices I did. And then I start working. 

Melanie: I like that you put boundaries around it, though. You have a time when you do your invoices. Because I just do them as soon as they come in, which means I feel like I spend my life in the NDIS portal because I'm just sort of doing it as it comes in. I love the idea of putting boundaries around it, but I worry that therapy centres will get pissy with me because they say on their invoices that they want it paid within two days. So I would worry that if I wait, I sat on that and did it in a week with a whole bunch of them that I get in trouble. But that doesn't happen? 

Sabikah: Actually, well, I have paid invoices in two months, two to three months. We have had the same therapist for the last five years. We do not have different therapists. We have a very good bonding relationship with those therapists. For Therapies for Kids, yes, we pay them. When we go there, they have our card. They just charge us. But for all the other services, they know that I will pay them eventually. 

Melanie: There's trust.

Sabikah:Yeah, they will send me invoices and there will be a second reminder of invoices coming. And then there will be a statement coming for the last two months that I haven't paid for. 

Melanie: But they know you'll get to it, and I love that because you need to do that for your own mental health. You can't be constantly, you know, spending time every single day, paying invoices. I think that's a really good strategy. And what other ways do you protect yourself from getting really overwhelmed by everything that's required of you? 

Sabikah: Burnout is real. It is, and I have. I have actually over the years tried to get hobbies and to have that time to myself. I don't get that time to myself. I really won't. But over time I have, I would look at YouTube videos for some things that I never knew I could do. I've become more creative. I have learnt new things, and that happens only in the half an hour to 45 minutes before I go to sleep. And that's my time. 

Everyone knows nobody can talk to me at that time, and that's when I'm either watching something, learning something. I have created a studio for myself in my house where I will create stuff. I have been working on a lot of projects that never come to the point of ending because I don't have the time to finish them off. But everyone knows that's my space and I need that space. 

I actually learnt the hard way. Because the emotional stress... if I was not doing that and before I was not doing that, I was always crying. I was so depressed. I was a completely different person. Then that helped me to get out of that depression grief phase and to give my full on, you know, my full self to the boys. 

Melanie: Obviously, you've had a lot of struggles and it seems like ongoing. It seems like every time you get a plan, you then have to get it fixed so that it adding again, you've had to sort of it really frustrates me that, you know, a children's diagnosis doesn't change, but it seems like we have to start from the beginning every time and explain what they need. 

But to sort of end on a positive note, you know, I kind of think the NDIS is definitely not perfect, but where the hell would we be without it? How has the NDIS helped your family? 

Sabikah: Well, we couldn't. We wouldn't be able to do anything if NDIS wouldn't have been there. It's as simple as that. So every time I go to a meeting, I make sure I tell them how grateful we are for them being in the system, for the NDIS, because. This is where it all started, we would never have been able to do so many therapies. We would never have been able to get so much support if NDIS would not have been there.

Yes, we have struggles, but the struggle is part of the system. NDIS has helped our family in getting to where they are now. My boy, my boys can walk. They can go up the stairs. Taha is able to take those five steps because we would do all those therapies. And if NDIS wouldn't have been there or they wouldn't have supported us, we would not do all this.

Melanie V/O : A big thank you to Sabikah for sharing her experiences and wisdom around the NDIS, and also to my sponsor, Hireup, for supporting me in making this podcast. I’ll catch you again soon on NDIS Know-how. 

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Melanie V/O: Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

In this episode I chat with Paul Pozzobon, a father of three whose youngest, 11 yo Max, has a condition called cerebellar ataxia, which affects the majority of his functions. 

Paul: Max's challenges are mainly in the physical space and with balance and coordination. So we do a lot of physical therapy with physiotherapists and occupational therapists, and that's predominantly aimed at getting him safely moving around his environment. 

Melanie V/O: Paul is currently the managing director of a large paediatric therapy centre in Sydney, but at the time of Max’s diagnosis, like many of us, he was completely new to the disability space. The Pozzonbons travelled far and wide - interstate and overseas - to find the right therapies and therapists for Max. They came across a US-based centre that was holding pop up therapy intensives for kids in Sydney.   

Paul: And it kind of just set us on a different path in terms of opening us up to the intensive therapy model, which is about, you know, a whole bunch of therapy squeezed into a three week period. So you sort of accelerate the results and sort of see the benefits of the outcomes in a faster time period than if you were doing traditional therapy over a longer term. 

So we got exposed not an early, early age with Max, and it kind of set us on our path for a therapy modality or therapy structure that really works for us and for our family. So we've been on that path since then.

Melanie V/O: Max was three years old when his family found this therapy centre, and by the time he was seven, Paul was the manager director of its first Australian branch. Paul has seen a lot of parents undertake the tricky, time-consuming art of building a team of therapists around their kid, and has oodles of advice in this area.   

Paul: In terms of what I've learnt about that whole process, you know, it's just don't give up. You need to find the clinic or the therapists that are the right fit for you and your family, and that will be different for every family and every child.  

Find a therapist or a clinic that's going to provide a supportive environment, not only for your child but for you, because that is going to help you infinitely in your journey over the next few years if you've got an environment or even an and admin team or contact within the clinic or whatever, or even the network of parents that you meet in the lunchroom or the parents lounge at your therapy clinic, that's going to be as important as as the therapists that are treating your child. 

Melanie: Yeah, definitely. One hundred percent agree. I've made such good friends sitting in the waiting rooms of therapy centres that Arlo’s at, that is so special and so cool. Those connections you make with the parents who are new to the place, and then meeting with therapists for the first time. Yeah. 

What are some signs you can look out like? I remember our physiotherapist, you know, was straight on to Arlo noticing the things that he loves, and she was also asking me, You know, how are you feeling? There were certain signs where I was like, Wow, I feel really good about this. What are some things that parents can look out for when they're meeting therapists that might indicate that this is a good one. 

Paul: I think one of the first things is knowledge. Obviously, you want someone who has a good deal of knowledge and experience behind them. Someone who understands the disability and how that disability is affecting your child's body, but can also articulate that back to you so that you can better understand your own child. 

You know why these physio should be able to tell you why the child moves in that way. And this is why I'm doing this exercise one million times with that child because I'm trying to address this. You're like, Oh, what? You know, as a parent, you look at it and go, Oh my God, they're doing that exercise again. Like, can't we move on? Like, surely, you know, but they're doing it for a reason. But sometimes, you know, if you've got a great therapist, they will articulate to you why they're doing it for the millionth time, right? 

Melanie V/O: According to Paul, a good therapist will also latch on to your child’s ever-changing interests, and stay in tune with whatever lights them up. 

Paul: Yeah. So that's kind of really, really important. The other thing is, you know, you need you need, you know, we're in the paediatric world. These are kids, so you need your therapists to have a level of fun. 

If they can't bring a level of fun or a level of play or a level of distraction into a session, they're not going to get your child through that full 50 minutes or hour or whatever the session is. So what's the point? You need, in many cases, your child to think that they're not doing therapy so they can get through the full amount of therapy that you've got planned for them. So, so in that respect, they need to have a level of fun and and then be able to sort of capture it along with the function. 

So that's kind of the last sort of element that I'd sort of speak to is the function that the therapist needs to be functional in that they need to be very, very aware and mindful of your goals. For the child, that needs to be very, very realistic with you about what's actually achievable in the time period that they're working with that child. And sort of because they might have to reset your goals you've set up and then they have to keep those goals in mind with everything that they do. 

Good therapists are good with your kid for the time that they're with them, right? But great therapists think about your child before, during and after their sessions, and, you know, a great therapist because they will come to the start of every session with your child and they'll be they'll be like, Oh my God, I've been thinking about this or has you ever thought of this or, Oh, I've been thinking about this game we can play that. I really think Max or Arlo, we're going to like or, you know, they're the ones that you need to find. They are the right therapist and come to your sessions as enthusiastic about what's about to happen for that child as you are as the parent. That's the secret ingredient.

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Melanie V/O: In the search for your kid’s a-team, you're probably going to need to try a few members on for size before you find the perfect fits. I ask Paul, what advice does he have for parents who are not feeling the love with their kid’s current therapist? 

Paul: Yeah, I think the two words speak up. Yes. You know, ask questions. It might just be a communication thing, you might just have a therapist who's absolutely killer at their job, but they just aren't articulating or communicating that in a thorough way to you, that’s putting you at ease.

Don't just sit there in silence. If you don't, just go, Oh, she'll get there. She'll get that. She can speak up, ask the questions, get the answer. If by then you're still not happy with the response or you don't think it's still right, then you know, start considering whether or not that is the right therapist for you. You know, you can't make it personal when it comes to the therapist. You know, some therapists and children just don't gel and just don't find a groove. 

Melanie: Yeah, absolutely. And like you say, they might be a good therapist, but it might just be a vibe like a personality thing. And as someone who heads up a team of therapists, you can tell me, right, these therapies don't take it personally when a client moves on. 

Paul: No. And you know, we've got a big clinic. And quite often it's not as if it's not like the break up, like you said, right? And then you move on, you start dating someone else and there's a low chance you're ever going to see that person again. In many cases, you may break up and then you're with the therapists on the next mat two metres away. Right? And you know, yes, that is a level of awkward, but our therapists are professionals and they understand that sometimes all elements have to come together for the therapy to work perfectly for a child. Right. And sometimes if there is a missing piece, then that child is better off with a therapist who can tick all the boxes. 

Melanie: I love it. We've got to have super high standards. You've got to have the best, and with the NDIS, we can have the best now. 

Paul: Absolutely, absolutely. 

Melanie: What kind of impact can a good therapist and a good therapy centre make on the experience of families navigating the NDIS?

Paul: I think these are all invaluable for your journey, so I think we've touched on that already, but I just if I can give a piece of advice, do not put up with therapy, therapists or a clinic that is just adequate. 

This life is hard. Acknowledge that, make it easier by finding the place that is perfect for you and your family. That is as a familiar place where you'll be surrounded by familiar people that will become your people. 

Therapists that you consider friends. 

And it includes your therapies. But it also includes the support staff, the receptionist, the admin team. This the person who schedules the intenses or schedules, the appointments, this and and the network of parents. So we've already spoken about that. You see around the place, this is what you're looking for. You're looking for a therapy, family or therapy community that's going to help you get through the next two, five, 10 years of your life whilst you're on this journey. 

Melanie: For us, we found our place in three different therapy centres. We've cherry picked. Arlos, physio, OT and speechie all work for different centres, so you don't have to commit to one. You don't have to get all of your therapy from the same place. 

Paul: Absolutely. Absolutely. That's very key. And I should reiterate that that's another good aspect or a good quality of a great therapist is someone is completely open to working with other therapists from other disciplines, no matter where they are. 

Melanie: Another point when you’ve got a good therapist, you know, when you've got a young kid and you're new to this space, a lot of people can be afraid to touch your child, to cuddle them. You know, your kid might be like ours was, spewing all over everyone that you go into these places and the therapists you know, will hold your child and be with them in a way that you're not kind of experiencing in your other circles of life. And that is just so, yeah, so they're not daunted. They're not afraid. And that's just so meaningful at the start of this. 

Paul: Oh my god, that's such a great point, absolutely. And that's what we would do with Max in the early stages with Max is that we would go into a physiotherapist who would barely put their hands on him. And we as uneducated or people who are new to this process could not understand that we were at a physiotherapy session and our child was barely being moved or manipulated in any way, shape or form. So we just didn't think that that Joe. So that's when we started Googling and we started searching what was out there. And as a parent, that's just what you got to do. If you think there's more you can be doing, then look for it. 

All I can do is implore everyone that if you're not happy. Look for better. 

Melanie: Yep, and a good therapist will much in and get dribbled on and get vomited on. They have a change of clothes. I'm sure they have many. It's not an issue.

Paul: Absolutely, absolutely, absolutely. But we've got a drawer of t-shirts and clothes that our work that therapists routinely got throughout the day for a change. And if they and if they don't, and if we run out of those and they start wearing, you know, the superhero costumes from and the costumes from the dress up box because that's all that's left. 

Melanie V/O: A big thank you to Paul for this awesome chat, and also to my sponsor, Hireup, for supporting me in making this podcast. Thanks so much for listening, and catch you again soon on NDIS Know-how.  

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Melanie V/O: Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

This episode is part two of my chat with Stephanie Wicks and Sandy Golder, who are the founders of an organisation called Thrive Tribe & Co, that supports families raising kids with disability. 

Steph and Sandy are both mothers of two, and are both raising daughters on the autism spectrum. Steph’s six-year-old, Charlotte, or Charlie, is autistic with a developmental coordination disorder. Sandy’s 11 year old, Imogen, or Immy, is Autistic and has ADHD an intellectual disability  

In part one of our chat, episode 5, we talked about how to advocate for your child when their disability and needs might not be immediately obvious. In this episode, we’ll be exploring how to look after yourself, as a parent navigating the NDIS on behalf of your child.

Sandy gets us started in answering my first question...

Melanie: How can we best advocate for our own mental and physical health as parents, as our kid’s primary carers in an NDIS planning meeting? 

Sandy: Do not sugarcoat anything in your meeting, like if your mental health is suffering, if your physical health is suffering, if your social health is suffering because of your child's disability, you need to be able to express that. Because we are known as informal supports, in NDIS language. 

So on the NDIS website, and I will be quoting this in my upcoming review, it says ‘the informal support provided by parents, siblings and other family members is vitally important to people with disabilities. In addition to the support provided, the close relationships that participants have with the people who provide this informal support can also be highly important.  

And it goes on to say how the NDIA values these informal supports and how important they are to sustain. So it's called sustaining informal supports. And this is where you can get support for you in terms of parent training. 

So a lot of our Thrive Tribe & Co programmes can be covered under parent training because we have a way of sustaining informal supports. So teaching parents and carers how to actually thrive through this process so that they can provide the best care for their young person, child, whoever they're looking after. 

Melanie V/O: I can tell you first-hand that a parent’s ability to thrive - or even just survive - relies on having external supports who can take care of your child. These might look like a family member or friend, but ideally, you want to be bringing disability support workers into your life. This can be easier said than done, as Sandy explains.  

Sandy: Support carers are very hard to get funded. The NDIA doesn’t want you to say words like respite, even though we desperately need a break. If you don't have any other informal supports to support you. So how we have had funding for support carers is we've linked it to a goal for Imogen and to our family. So one of our goals for Imogen is to build a strong social network of her own peers and friends, without having to rely on her informal support, which is us. 

So that means that she's able to get support from a support carer to take her into the community or to social things and support her in building friendships. 

We also have a goal around sustaining a cohesive family unit, which means that all of our needs need to be met. So I think building these goals into your child's plan is really important, and it needs to link to their well-being, but also the sustaining those informal supports. 

And the NDIS has really helped us to develop support networks around us. So Immy has all these organisations and people now that can support her. So if something happens with one of them, she has the support of someone else that's helped us build relationships with different organisations and different carers. So when big things happen now, I can reach out to someone. Like a couple of weeks ago, I had to reach out to a previous carer and say, are you free tomorrow? I need some headspace. I just need a day off. I can't keep I can't keep this up right now. I need some help. And she was like, yes, I'll be there. And Immy was so excited to see her. 

So for us that meant I didn't have a breakdown. And that I could go back to being mum the next day, but felt really supported as a family. So without the NDIS, we wouldn't have those support networks and it's taken us years to build them up. But that's what the NDIS can do. It can just help families feel part of a community, it can help kids to become that best version of themselves. It's just a matter of getting those right supports in place.

Melanie V/O: In addition to support workers, another big source of support for parents raising kids with disabilities is other parents raising kids with disabilities. As Steph explains, people travelling a similar path to your own just get what you’re going through, and can provide so much comfort and knowledge.   

Steph: We started Thrive Tribe & Co, obviously, for the reason of bringing families together. Families who understand what it's like. Even if you remove NDIS from it, just the everyday journey, right? So I remember when we first started walking the journey with Charlie, and we were taking her to speech therapy, and I was just like, I can't believe I'm doing this. I can't believe this is what... like I don't know anyone else who has to do this with their two year old. Like, are there any support groups? 

I remember asking New South Wales Health, the people that were helping us at the time, and they were like, no, there's not really anything, or there was, but there might be something in like a couple of months' time. And I was like, I’d really love to speak to someone, now, who understands what we’re going through. 

And so that's why I suppose we created the space and it's grown and it's awesome. So we'd also encourage people to use this space to ask questions - and they do, don't they Sandy? To ask questions or get referrals to different resources that are out there in the community that are standing by to assist us. Like, assemble a team of people that are going to stand by your family and your child. 

I remember, every email, when we were doing Charlies NDIS plan a couple of years ago, was like, Team Charlie. So everything was like, what does she need? And people that are really there to see your child get the best outcomes possible and our community can help kind of bring that together. 

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Melanie: Guys, you've already touched on this really beautifully, but do you have any more tips? I guess generally the parents like us who are navigating the NDIS, many of us are self-managed, especially in the early years, dealing with appointments, diary management, invoices, and just the general challenges that come with being a parent to a child with a profound disability. How can we look after our own health in this lifestyle? 

Steph: There's a lot of noise about how you should do things, but I also think it's quite unique. So for example, being self-managed for us, works, because it means that we have complete control over where those funds go throughout the period of 12 months. And I can manage that, like I have the time and skill set to be able to pay those invoices on time and make sure that it works.

And I suppose just being super organised with knowing when things are happening and when you've got organisation feel, things feel less overwhelming. I feel like that's just a general rule for life. But it's certainly something that you have to learn over time and that you can adapt to and you become better at. But again, there are also services that can help make that easier. 

So, for example, if you've got a child who’s quite complex and has five or six different appointments a week, maybe getting some support to do that. Know the system and what your options are, and educate yourself on that, is so important. 

Sandy: I was going to touch on the best option in terms of managing your funds. So I self manage as well. However, my dad loves spreadsheets, so he has the budget for me and is really helpful like that. So if you are someone who doesn't want to do that though, plan management might be the right way for you. 

I would not, personally, ever go agency-managed. It's very restrictive in terms of who you can spend your funds with. I know they look after everything for you, and I've got some friends who are agency-managed. However, it restricts who can use the service providers, because they need to be NDIA registered. But plan managed, you have some flexibility like self-management, but the plan manager takes care of all the bills and stuff. So that's, you know, if you find self-managed too much, then plan-managed would be the way to go. 

Melanie V/O: On the topic of admin - time and diary management is an area where we can afford to cut ourselves some slack. Certainly according to Sandy, who gives this advice.

Sandy: Don't overcommit. So I'm learning this lesson now that I need space and to slow right down. And I have always been known as the person who can fit everything in. And people would say, oh my God, I don't know how you have the time to do it all. Turns out, you shouldn't even pack your diary like that. This is not good for you. 

So don't overcommit is my biggest tip. Like, how can you make this more workable for your family? Can you get therapists to come into school? Because lots of therapists now - not in covid times - because it's a bit strict, but outside of that, once this is all over, therapy can be done at school. 

Can you have a support carer cover one of those therapy appointments for you with your child? There's ways that you can take the pressure off you and still get things done. 

Don't be afraid to cancel an appointment if you need to. Like, there are some times where there is just not enough space in your brain or, literally, physically in your week to make those things happen. And whilst therapy is important, so is your mental health. So is the family's well-being. So it's it's a matter of finding the balance between those things. 

Melanie V/O: Sandy also suggests doing a bit of forward planning in the lead up to events or periods of time that you know are going to be really full on. 

Sandy: There are going to be these times of stress. So, for example, the two weeks leading up to an NDIS review in our house, are just like stress central, I feel like I'm in a black hole trying to sift through all the things. So in preparation for that, I'll have meals in the freezer. I will plan to have not many things in my calendar. And I'll know that when I come out of that period I'll need some downtime. 

So planning those things, we can't take away all the stresses. And it might be an intensive therapy, two week block, or something that's along those lines. But they are going to come up. It's learning to roll with it and manage those so you can come at the other side as a cohesive family unit and everyone's well being still intact. 

Melanie: As hard as the NDIS is to navigate, and all the admin and all the finding the team and all of the justifying our needs, I don't know where the frick we’d be without it. How has the NDIS supported and helped your families? 

Steph: For us, it allowed Charlie to access years of early intervention that we wouldn't have otherwise had the capacity to pay for. I remember we started getting her speech therapy when she was like 18 months old, two years, and  was paying out of pocket. And I remember just being like, oh, it's two hundred dollars, it’s two hundred each time, and I knew that she needed it but I was like, I don't know how long we can do this for. 

And I remember cancelling a meeting because some weeks I just didn't have the money, like we didn't have the money to do it. And the therapist understood. But I thought, how are we going to do this long term? And we were lucky that although it was a fight and it was a process and it was hard, if we didn't get that funding approved, who knows if she'd be in a mainstream school doing so well right now. So I'm super, super grateful that we've had people on our side and we've had NDIS to support us throughout these early years.

Sandy: Ditto to what Steph said. So the access to therapies like Immy’s communication progress, her life skills, like we have a wonderful support carer who comes here two times a week and is teaching Immy stuff that she won't learn from me, because my little cherub doesn't want to listen to her mum! 

Our family wellbeing would not be where it is without the support of the NDIS. And when the NDIS gets it right, and you get the support you need, it is truly magic. Like the impact that it can make on families is awesome. It's just a matter of getting the right supports in the first place. 

I just think that making yourself a priority, and I suppose this is the ethos of Thrive Tribe and Co, as carers, like really valuing our own worth and our own health, and making ourselves a priority each day. Like doing the little things, just prepares us for this advocacy piece. 

Because we're going to have to advocate for our kids forever, right? Whether it's NDIS or education or rights or whatever it is. But we can't advocate from an empty cup. So understanding that you are an investment and in order for you to get the best result for your child, you need to actually invest in you first. I just think it's such an important message that we need to talk about a bit more. 

Melanie: Definitely. You can’t advocate from an empty cup. I love it. We need that on a tshirt as well. 

Melanie V/O: A huge thanks to Sandy and Steph for chatting with me and sharing so many tips on how to look after ourselves, and thanks also to my sponsor Hireup, a platform that helps families like mine find the best support workers for their kid. That’s all for now, catch you next time on NDIS Know-how.  

** Outro music **

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

This episode is a two for one deal. I chat with Stephanie Wicks and Sandy Golder, who are the founders of an organisation called Thrive Tribe & Co, that supports families raising kids with disability. 

Steph: To help people and families, I suppose, find their healthy, happy place in a way where they can come to terms with any diagnosis and live a joyful, healthy, happy life. So that's basically what we do. 

Melanie V/O: Steph and Sandy are both mothers of two, and are both raising daughters on the autism spectrum. Steph’s six-year-old, Charlotte, or Charlie, is autistic with a developmental coordination disorder. Sandy’s 11 year old, Imogen, or Immy, is Autistic and has ADHD an intellectual disability  

Sandy and Steph guys gave me so much goodness and, as such, I’ve split our conversation into two parts, so make sure you catch our next episode, which shares their tips on how to look after yourself, as a parent navigating the NDIS. 

In this episode, we chat about how to advocate for your child when their disability is invisible, or not immediately obvious. I start by asking Steph and Sandy, what’s the biggest challenge they face in getting the funding they need for their daughters?  

Sandy: I think, proving their disability. And I know that sounds crazy because when we see it, it's quite obvious, but for someone, particularly like Charlie, Steph's little one, she masks. So if you didn't know her or didn't see the aftermath of her masking, and Steph could explain this in more detail, you wouldn't actually know that. She just looks like a normal, beautiful little girl. But, you know, she'll mask day at school and then comes home and

Steph: Blows up, yeah. And it's so fascinating because, you know, we've got like Immy and Charlie have the same diagnosis, autism, obviously slightly different levels, but they both got the same autism diagnosis. Yet their individual autism is so different. And I think that's one thing that the NDIS just is struggling to kind of maybe adapt to what that looks like in the framework. 

Charlie is like in a mainstream school. She's verbal. She's doing amazing work. I'm just so proud of her. She's a little rock star. But yeah, it is so hard to get her what she needs. And I've realised, looking back, how important my advocacy in those early years was and continues to be now. 

Sandy: If you meet one child with autism, you meet one child with autism. They're all so unique and different and all have different triggers or needs or talents.

You know, lots of people look at Immy and they're like, oh, my God, look, she just she's so beautiful. She looks so normal, you know? And it's not until I actually sit and watch her for a bit and can start to see my Imogen’s behaviours show up very differently to Charlie’s, so it does become quite obvious once you see it and you actually pay attention to her for a bit. 

But being able to prove that to someone from the outside, from the NDIA or from whatever organisation does your planning meeting, can be really tricky. And to then be able to prove that these behaviours or these needs are outside the normal scope of parenting, which is a phrase that likes to be thrown around a lot in our planning meetings, can be really tricky. 

Melanie: According to Sandy and Steph, the best way to prove your child’s needs is to be armed with reports from specialists and allied health therapists. For Steph, who’s daughter Charlie only recently received her autism diagnosis, this was all the more crucial in the lead up to her starting at a mainstream school.  

Steph: I actually had to source this amazing psychologist who specialised in “high-functioning autistic girls”. And I do air quotes very, very boldly there with that level thing. But basically, she watched her at her day-care for seven hours and took notes about her social interactions and, you know, her transitioning from one thing to another. And it took that person to take the time in that space. Give us a 50 page document that I could pass on to her school. 

So that was a game changer for us. But not all families know that that's something that you need to do or that's possible. And that's, I suppose, the lengths just showing the lengths that you have to go to in order to say that this child needs support. 

Sandy: Having those reports that prove whatever you can get from whoever is involved in your child's care is really super important. So it can be things like if you have a speech therapist or an OT or a physio or a psychologist or whoever it is, doctors. So I've had my GP write letters. Paediatricians. You can get school staff to write letters, or any, if you use any disability services to support your family, they can write letters. 

I was asked in my last review, did I have any hospital reports or police documents to prove, you know, whether I Immy had had to be admitted or any of us that had to be admitted due to her behaviours.So they're looking for very specific things. So the more proof that you can have outside of your word is really helpful.  

Melanie: What other advice do you guys have, for parents, especially those with younger kids on the spectrum, when they're approaching the NDIA, when they're approaching NDIS planning meetings, how can they convincingly get across what their child's needs are to get the funding? 

Sandy: I think also being super clear on your child's goals, because the NDIS fund goals, they don't fund therapies. 

So you’ve got to be super, super clear on the goals. And also getting really, I feel, like knowing your rights. Knowing the legislation, knowing the language that the NDIA use and being able to use it back to them, because they want you to prove that the goals are reasonable and necessary and are good value. 

And I know, I actually find those terms really offensive because my daughter, her development is very reasonable and necessary to me. But someone in an office can turn around and say, I don't think that's reasonable and necessary? I find that offensive. So I don't go in and I try and look at it from the outside and use their language back to them. So I prove to them why this is a good investment. 

So NDIS is National Disability Insurance Scheme. And when you start looking at it from that perspective, you can tailor what you're saying and how you're presenting things so you can show them why it's a good investment and how it's going to save them money later on and why it’s reasonable and necessary for you to set these goals and ask for these things. 

Melanie VO: As Steph points out, this is not stuff you’re likely to know anything about prior to entering the NDIS space. 

Steph: It's a total skill set. It really is. To understand how the system works and then to use that language and then know that language and then to write goals around that is a complete skill set. And I think something really important to note as well is that so many of our families, like us included, you battle with the emotional side of things as well, because at the end of the day, this is your child. This is like your love, you know, and to have to all of a sudden switch and talk about them, like under a dollar value is quite confronting. 

And I suppose it's about maybe compartmentalising that emotion from what you need to do to get your child that support. And if you aren't in an emotional space to do that or to disconnect yourself, which is completely understandable, know that there are supports and systems out there to advocate for you so that your child can get what they need at that time. 

So I suppose it's knowing, because they don't give you this information on a platter and say this is here and do this and this is where it begins, like they just don't tell you. So equipping yourself with that knowledge and knowing that there are resources out there that can support your family is everything.  

** Middle music **

Melanie V/O: When your kid’s disability and needs are not immediately obvious, you really can’t cut corners in your dealings with the NDIS. According to Sandy, this is not the time for playing down, or glossing over any details of your family’s life. 

Sandy: Be super specific. Sugarcoating does not help at all. Don't be afraid to show your emotions and how it affects you and your family. Don't use metaphors, like, say it exactly how it is. They're going to want to hear about risks. So unfortunately, this is how it's working now. That's why they asked me for hospital reports and police documents, because I basically had to prove that Imogen’s behaviours were either a risk to her, a risk to the people around her or the community.

And being really specific about those risks. So, for example, Immy is an absconder, which means she'll run away from school or run away, if we’re out in the community, she will see something and she will run. It's not enough for me to say, Imogen, when we're out in the community, will see a shop and try to run to it without noticing danger. 

I need to say Imogen will see a shop in the community, try and run across a busy road with no knowledge of road rules and could get hit by a car. She could also cause us to be hit by a car because we're chasing after her. You've got to be that specific. I know it sounds ridiculous, but that's really how to the nitty gritty you need to get because. Because these people sit in the office and they don't have any understanding of what we go through on a daily basis. So the more specific, the better. 

Melanie V/O: Sandy and Steph tell me that, as our kids get older, advocating for their social lives becomes more and more important. 

Sandy: I can't leave Imogen alone. I have to be on her at a park, which affects her ability to interact with other children because it’s weird to have the mum hovering behind a ten year old, who's almost as tall as me, to make sure that she doesn’t do the wrong thing or push anyone off a swing or down a slide. Or going to a birthday party - she will literally try and jump the fence. So we need to be on her all the time, which, in developing relationships, is really tricky. 

So then there's a whole other area where you're like, well, how do we give her some space from her parents? So she has the opportunity to develop relationships and friendships but still keep her safe. 

And that's how we've been able to have Immy build a support network around her with young fun support carers, which are sort of like her buddies, that go places with her that allows her to experience those social situations that the stigma of having the mum or the dad hovering over the top of her. 

Being able to be part of a community, to interact, to communicate like that is that is my number one wish for Immy, is that she can just be loved as part of a community and have friendships and relationships. But then proving that it is important to the NDIS, and how she differs so much because it's subjective, you need to have evidence. So we need to provide all of these specific examples. 

Steph: And how do you, for our situation, Charlie will mask. She'll go to a park or a birthday party or whatever and have a smile on her face and sit there and do the right things. If anything, she's like listening to everybody. Yes, OK. Yeah, absolutely. But then as soon as we leave, she will freak out or as soon as she's back in her safe space, she'll slam the door to her room and throw things and scream in her bed. And we just have to let her have that now. 

But I also would like to learn like, how does the world, or how do we support her, so that as she grows older and she's not like six or she's 16 in her room, that she can access those social situations and have her mental health supported, and get those skills. But how do you show that to the NDIS? Like, how do you compute that? How do you get evidence for that? So that's our struggle personally.

But again, making social connections for her is really hard, like it's so hard for her to do. And she does it sometimes successfully, sometimes not. But yeah, that's one of our goals as well, just to be able to have a community of people that love her, how she is without having to mask. What a dream that would be. 

Melanie V/O: The energy, admin and persistence required to get our kids the supports they need takes it toll - not to mention the emotional weight of having to spend so much time focusing on your child’s so-called deficits. 

Sandy: It's taken me eight years to not bawl my eyes out reading every report that comes back. 

Melanie V/O: In part two of my chat with Sandy and Steph, we explore how parents can advocate for themselves, and their family as a whole, to keep everyone’s well being in check. That’s up next, in episode six. A big thank you to Sandy and Steph for sharing their wisdom, and also to my sponsor, Hireup. Catch you again soon on NDIS Know-how.  

** Outro music **

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

In this episode, I’ll be chatting with Michele Bailey, a mother of three sons including 23 year old Alec, who has an intellectual disability. In this conversation Michele talks about being plan managed, rather than self-managed or NDIA managed, and sheds some light on the reality of plan reviews. She also shares why it’s important, as a parent navigating the scheme on behalf of their kid, to be confident - and what she calls a “nice, happy, positive squeaky wheel”.  

Michele: Don’t feel threatened. Like I say, sweet talk works. 

Melanie V/O: In addition to mothering three young men, Michele runs her own photography business and a platform called Social Knowledge Skills, which champions accessibility and inclusion. She’s also a volunteer firefighter, a rowing coach and a disability support worker. 

Needless to say, Michele is busy. As such, she’s chosen to go the plan-managed route when it comes to managing Alec’s NDIS funding. 

Michele: I decided not to manage my plan. I wanted to get someone in that knew the ins and outs, straight away. 

Melanie V/O: For Michele, that someone is a Plan Manager in charge of paying Alec’s providers, keeping track of his funds and gathering reports. 

Michele: So I could have been self-managed, not a problem. But because I have these two different businesses that I’m running, and just in general, being a mum, I just found it easier to have a professional on my side.  

And anything technical, I could always refer to her, and we would be fine from then on. And anything that I didn’t understand, it was so much easier to have her there. And I don’t know if you ever felt it but when you go to meetings, they always talk about the language. You’ve got to use the right language within the meeting, you know? You can’t presume anything and you can’t say, oh well, we need this access because of… You’ve got to have all the paperwork backing it up what you need and what you require.

So she was able to come in and, for once in my life Mel, I was actually quiet. And I actually sat there and behaved myself - I always have an extra word to put in, because language is my thing. And it was great. 

Melanie V/O: As Michele has described, Alec’s Plan Manager has been by her side, advocating at NDIS planning meetings - but this isn’t the only way to be plan managed. 

Michele: You can also go to people like My Plan Manager, who manage your plans, and they’re not really that involved. So all these professionals just send their invoices into people, and they just take it out of your plan and it’s done like that. You don’t have to be managing all the money and the receipts yourself. 

Melanie V/O: Alec uses his NDIS funds for his support needs across both work and play. 

Michele: The supports that I have for Alec, I’ve got them in place because of how active he is. So he is a young guy, he loves kicking the football, the basketball. He loves doing physical activities. So I really need someone that really likes doing that as well. And also understanding the social side and how to interject if Alec is feeling he’s part of the team and part of the place. So yeah, they’re really individual and unique supports. And it’s through a provider service. 

And I like that. It makes things a lot easier for Alec. And Alec gets to choose support workers too... 

Now he has a job, he works for Lasercraft and he loves it, and they have support workers inside the factory that assist everyone to do their day-to-day work. 

Melanie V/O: Alec’s current plan covers all of the support he needs, but this was not always the case. When the NDIS first rolled out in his area, in 2016, Alec was in an age-group that, according to Michele, the NDIS didn’t properly cater for. 

Michele: They sort of missed out on the school leavers. So there wasn’t really a lot of money with the school leavers transitioning from being at school into a program, and to transition into a job even. 

They gave everybody that was leaving the school, that I know, this is my personal knowledge, $19,000. $19,000 was not going to provide a year’s service and that was not going to help in paying those programs with a company somewhere.  

When we got $19,000 I went, what? This needs to go to review. 

Melanie: They really freak us out in saying, you can ask to review your plan but there’s a chance that you’ll be given less money the next time around. What do you have to say to that? Was that your experience of reviewing a plan?   

Michele: I rang up a couple of people and got some professional advice on what I had to do next. And in saying that, it was a long process. And we went through quite a few LACs, and quite a few people with the NDIS. Some really knew about the structure and knew how to give you more money, and some didn’t. But I think the squeaky wheel process works so long as you’re a nice, happy, positive squeaky wheel. 

Don’t become a negative Nelly, as they say. Don’t say, I want this much funding! This is not acceptable. You’re not going to get anywhere if you’re going to be angry. 

That’s the first thing. That’s the key to it all. If you just remain calm and have all these quotes to actually get a bigger plan, for the next year, they can’t turn you back on that. And also, there’s different levels of legislation and different levels that you can go through in the process if you're not happy with what you get back the first time, if you go to review. 

There is another step up level from there and then you can step up from there. You can end up in a court proceeding. I do understand that. But if it’s something passionate that you’re fighting for, you’ll be happy to get there. But I don’t think that process needs to happen, either. It would have to be really serious. 

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Melanie V/O: We all know that knowledge is power - and Michele tells me that by studying a free, online support coordination course through her local TAFE, she gained a lot of insight into the inner workings of the NDIS. 

Michele: That’s why I knew all the levels you can travel in to get to where you want your plan to go, and if you’re not happy about different things in your plan, you can put forward a review. 

And you’ve got to remember, too. These people who make the plans, write the plans, some of them don’t have a disability. Some of them don’t have a person with disability in their life. They don’t live in your world, they don’t live in your life, and that’s why you have to make them see what your typical day is like. 

Melanie: On that, Shel, what advice do you have for other parents who are preparing for NDIS planning meetings. 

Michele: The most important thing is to have a great team backing you up. If you use a lot of different providers and a lot of different specialists, they need to talk to each other. That’s absolutely key. Because one might not know a little bit about what services and what things they are doing, and combined, they can make it a big group team effort. 

Having as many reports as you can before you actually go in there is vital. So do research, find the accurate supports that you need, and make sure you get into those supports before your plan meetings, so they know that’s already continuing, and that’s something that you need in the future.

And don’t forget the social sides, and don’t forget about the respite that you will need, as well. That’s key, because a lot of people forget about the respite. And with me, it’s so funny, I used to say, hey, we don’t need respite! But it wasn’t about us as a family needing respite, it was about Alec enjoying himself away from us, as having respite. 

It’s about them as an individual, and that’s where the whole choice and control thing comes in as well. 

I think it’s key to have everyone involved that needs to be involved, have all those reports written correctly, and even though some might be long, try and make them really precise, straight to the point. 

Get quotes for things. So if you have got a wheelchair, and you want a super-dooper one, obviously you know how hard it is to try and get that extra level of wheelchair because the NDIS will say, do you really need that? You’ve got to have backup information on that and say, yes I do actually, because I’ve researched it and this is what we need to do.

Melanie V/O: As Michele says, arming yourself with good reports for an NDIS plan review is vital - and this is why you need superstar medical professionals, therapists and support providers behind you. 

Michele: I would find specialists that understand you, and get you, and are going to be with you, standing beside you and have your back throughout the process. If you’re not happy with something somebody is saying, try and find somebody else, you know? Speak to many. It doesn’t hurt. And I know that is a process, for your person, to go and meet all these people, but it will work out in the end, because you will seem to get more money. 

Melanie V/O: If you don’t get enough funding in your child’s NDIS plan to cover their therapy and support needs, fear not. Michele assures me that there’s plenty of room for improvement.   

Michele: Be confident, don't get upset about what people are saying, because you can work it out later on as well. If there’s things that you get in your plan that you don’t like, obviously you can take it to the next level. 

Don’t feel threatened. Like I say, sweet talk works. Be positive. I’m very gracious. When Alec got a really perfect amount of money, I knew we could work with it and have a successful life and be happy. Sometimes we do run out, towards the end, but then again that’s good management. If you’ve got someone managing your money properly, they won’t allow for it to run out, and they will give you constant reports on that.

But when I received a larger sum, I did probably hug a lot of people in my office, and I apologised for getting excited about it, but I just couldn’t believe it when I saw that larger amount of money. But yeah, it took years, three or four years to get to that perfect amount that would hold us nicely. 

Melanie V/O: Hopefully, with the NDIS getting better and better and people like Michele sharing their wisdom, it won’t take other parents years. A huge thanks to Michele Bailey for this chat - and thank you for listening. Catch you next time on NDIS Know-how.  

*** Outro music ***

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks, how can parents get the very best NDIS plan and ample funding to support their kid? 

This podcast is written and made by me, Melanie Dimmitt, the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

As a parent to my five-year-old son, Arlo, who has quadraplegic cerebral palsy and epilepsy, I know firsthand how hard it can be to navigate the NDIS. So I’m grilling savvy parents and experts in the disability space to find how I can advocate for my child and get the funds our family needs to live a good life. 

In this episode, I’ll be chatting with pediatric occupational therapist, Prue Nix. Prue is the clinical director at a large, Sydney-based therapy provider, and oversees the creation of at least 20 NDIS reports every week. This woman is nothing less than an NDIS report writing guru and, full disclosure, she’s also my son Arlo’s OT.   

Melanie: Three and a half years now Prue. We’re in a long-term relationship. Long for me. 

Prue: Love it that way, love it! And as a result you’ve seen some of my reports, and seen how they’ve changed a bit over time, as well. 

 [Melanie V/O] In our chat, Prue takes us through the steps of writing a good report with clear goals, progress and recommendations - which, in recent years, has become all the more important. 

Prue: Without those reports we have previously had people, certainly with the role out of the NDIS, people who really didn’t understand the whole picture, or even the small picture of the children that we were talking about.

So in that sense it was really important to paint the right picture to get that funding and justify that funding. 

[Melanie V/O] My first question for Prue is, how can we, as parents, help our kid’s therapists write a good report? 

Prue: Really, you guys knowing the goals. 

So, I think there’s a huge tendency to go, right, I need 100 hours of physio, I need 100 hours of OT, and I need whatever, but ideally, you’d just have a really nice - not a big picture, and it doesn’t have to be one of the future - just real. What do you actually want? And then we can really help structure that around some of those more clinical things. Or stepwise into some of the functional capacity building things.

Melanie: Yes, so we need to come to you with goals, and then you attach those goals to the therapies.

Prue: Our goals, absolutely. So we really break it down. So if you have your NDIS plan and you’ve got your goals, and those goals are well-worded in the sense that they cover some community access, some gross motor… and they might not have those words in there. It might just be, we’d love to be able to go to restaurants as a family. Or we’d love to take a family holiday. Those sorts of things we can really break down and it really does work. 

As big as the jumps might be from one of those big-picture goals of going on a family holiday, down to then, well what do you need the physio to do and the OT to do? But we can really do it, and it puts us in a nice picture of you and your family. And what you want and how you’re going to live.

Melanie: I love that. I’m so adding in the goal of going on a family holiday, once we’re allowed to, to our family goals. 

Prue: Absolutely. I think that’s all our goals, right? 

Melanie: Totally, totally. You mentioned wording, and I’ve learnt that that’s so important. We always hear that we need to use “NDIS language” in reports. 

Prue: So I think this is in a point of change at the moment. A state of change. So in order to use that NDIS language, I think therapists have really done it very strongly. Things like “to build capacity”. Things like “reducing future costs of care”. Things like “community access”, I suppose. And “social participation”. So they are the really keywords that are the driving structure of the NDIS. But, I think we’re having a bit of a pushback on that at the moment. 

I think we were, for a while there, just trying to meet the NDIS with the right language and tick some boxes, and it wasn’t always real. Not every bit of intervention that we do, even if it is self-care related, is actually going to reduce the costs of care in the future. Particularly when we’re talking about some of our kids. 

It shouldn't really matter whether it reduces the cost of care or not. I understand that it does, from an insurance perspective, but at the same time, what are we really trying to do. We’re tying to improve the child and the family’s quality of life, maybe improve their function if we can, certainly improve their participation and ability to access the community if that aligns with their goals and the family goals. So what I’m encouraging my team to do now is really say it as it is. Say what we do, say what we want, say what we see, and just reduce the crap. 

Melanie: Yes, cut the crap! I love it Prue. So I’m so glad that things are changing. That really encourages me that you guys are pushing back on the language there.

Prue: I think it’s on its way. I think one thing that’s still lagging is, unfortunately, the tone of the reports, whilst in most parts it’s an advocacy style, reporting from an allied health professional. We try and justify what you want and need from the therapists themselves, out of therapy, but the tone of our reporting is negative, not positive.

It’s not enough about what that child is achieving to meet their goals, and their sub-goals, which we’re trying to change that, but it has been and continues to be, a deficit based, you know, they’re not able to do this, and they’re not at an age-appropriate level. They’re not participating. It’s that negative tone I suppose.

Melanie: Yeah, we’re still told to talk about our kid’s “worst day”. And paint that as their whole lives. 

Prue: That’s right, and when we get parent’s feedback on reports, it’s often worried that we’ve painted them in too much of a good light. Which is so - could you edit this because it sounds like they can do everything that you want them to be able to do. 

So with trying to curve that around, and let’s say what they can do against their goals, we’re starting to say what would happen if we didn’t receive that intervention. If we weren’t doing this, what would happen? And that’s the way we’re justifying keeping on going. So yep, we’ve done really well, but rather than restating what we can’t do, we’re trying to say, if we didn’t have this intervention or we don’t have this piece of equipment, then maybe, back to your social participation, that child would be excluded, or restricted, for their social participation.

Melanie: Yes, you make some threats, I like it. 

Prue: Yes, exactly. 

*** Middle music ***

 [Melanie V/O] On a practical note, I ask Prue how an NDIS report should be structured. Prue tells me that although her company uses their own format, the NDIS does have a report template for early childhood early intervention, or ECEI, providers, which I’ve included in the shownotes.  

As a general rule, NDIS reports start with a little bit of background information on your child. 

Prue: If it’s an initial assessment, if the child isn’t known to you or isn't well documented, or new to the NDIS, you probably give a bit more of a background, but I’ve very much asked people to pull back, and not to keep rehashing that each time around.

I think as parents we don’t need to read it, and I think we should be expecting the NDIS to come with some assumed knowledge about this child as they develop a history through the agency. So with that in mind, that background is becoming shorter, and includes something about that child and what they like, who they are as an individual and a family unit.

[Melanie V/O] Then comes some assessment results or scores, which as Prue said, are often deficit based or age-related. The NDIS has a list of standardised assessments for various disabilities, which you can find a link to in the show notes.  

And then, it’s on to your NDIS goals, and what goals we’ve made underneath those goals. And how we went about achieving them. So some progress against the goals. 

[Melanie V/O] Prue says that SMART goals, which are Specific, Measurable, Achievable, Relevant, and Time-Bound, are well received by the NDIS and ECEI assessors. When showing how a child has made progress toward their goals, her advice is, simply, say it straight. 

Prue: Say it as it is. What do you do? Tell me what you do, why you’re doing it and what you’ve seen happen? Whether that’s a change or any level of enjoyment. And that’s really what we need to be reporting on, and that’s against the goals. So I don’t want to know all those NDIS words for word’s sake. I really want to know the reality. 

You’ve read books and turned the pages, why did you do that? For some fine motor control if it’s pinching the page, or for reaching across. And what will that mean for that child in the long run? 

So reading, really enjoys books. That’s amazing to let their light shine and really have some enjoyment. But also that arm range might have implications for dressing in the future. Even if it’s someone else dressing them, at least they can open up their shoulders and armpits, and they’ve got the arm range so t-shirts can be put on more easily.

Just tell me what you’re doing, why you’re doing it, and that should really be enough. 

[Melanie V/O] After reporting on the child’s goals and progress, it’s time for the therapist to make their recommendations. 

Prue: What do you need? What are you going to be doing, what do you plan to do in the next plan period, and how does that align with the family’s new NDIS life goals? And then a bit of justifying that. 

If you really think that that child needs to be coming weekly, or twice-weekly, or just monthly, whichever way it goes, say it. Say it as the clinician, as the professional, and I think where we’re trying to go is, maybe say that more heavily, so the NDIS understand, we’re not ticking boxes, we’re not trying to be in box, a, b, c. We are saying clinically or therapeutically or professionally, I believe this child this frequency. Or this amount of therapy, or this intervention or this AT. 

You might justify intensive therapy, you might throw a little bit of an extra justification re: why you’re asking for that wheelchair, or the wheel commode, or something there either with some lived evidence, some therapy experience evidence, or actual written evidence. So that’s where we might throw a bit of a quote in there to say children who have powered wheelchair mobility from an earlier age reported a greater quality of life score.

Melanie: Ah, so you include some study and research stuff in there too sometimes.

Prue: Absolutely. And one of the great ones that I’ve loved in physiotherapy and OT reports is a reference and breakdown of some of the F words as well. 

[Melanie V/O] Just jumping in here to explain that Prue means the six f-words identified through research into childhood disability that are used as a focus for development, These are Function, Family, Fitness, Fun, Friends, and Future.

Prue: So it’s a nice way of talking about each child and breaking down what you’re asking for. Where the dollars are going. 

[Melanie V/O] Prue tells me that while it isn’t the OT, physio or speechies responsibility to justify the need for support worker hours in their report - especially for younger children - they can include details in the “other support recommendations” section to help us out here. 

Prue: So, both parents work full time and need to continue to engage in this and have limited social supports around. And home programs need to be done for therapy, to maintain muscle length and stretching regimen. Then you can say, therefore a therapy aide or care support worker hours would be recommended. 

Melanie: How do you make sure that your recommendations are super clear, and get actioned?

Prue: I think you can make them super clear, and that’s with your justifications. So making sure you’re not asking for something that you haven’t even drawn a reference to a need or reflecting what was done in the previous plan. 

I don’t know if you definitely get the funding just because we say it. But then little things like, your named extras. Don’t certainly making sure you don’t just ask for $1000 worth of low-cost items. You can’t do that any more, you’ve got to really name what you might be buying what you need as low cost-items. So name the shoes, name the therapy ball, name the switch or whatever it is. And for the bigger, high cost AT, again, naming it and making sure that there is a goal that directly relates to it in the families NDIS goals. 

Melanie: When you hear from parents, once the plan has come back, are they generally disappointed, or is it getting better?

Prue: No, look, I find most of our families are pretty pleased with their plans. I think there’s a lot of fear. And that shouldn’t be the case. We should be able to be confident in the system that is supporting us, our kids and your families. We shouldn't be fearful of going to them and equally, we shouldn’t be fearful of, if circumstances change, going for a change of circumstance and asking for that.

[Melanie V/O] A huge thanks to Prue Nix for sharing her NDIS-report writing wisdom with us - and thank you for listening. A special thanks also to those of you who’ve rated and reviewed NDIS Know-how on Apple Podcasts. I’m so happy to know that it’s helpful! And will be back with another episode soon. Catch you then.   

*** Outro music ***

ECEI NDIS Report template: https://www.ndis.gov.au/media/2639/download?attachment

 Types of disability evidence/assessments: https://www.ndis.gov.au/applying-access-ndis/how-apply/information-support-your-request/types-disability-evidence

** Intro music **

[Melanie V/O] Hello and welcome to NDIS Know-how, a podcast series that asks parents how they get the very best NDIS plan and ample funding to support their kid. 

This podcast is written and made by me, Melanie Dimmitt, a freelance writer and the author of Special: Antidotes to the Obsessions that Come with a Child's Disability, and sponsored by Hireup, a disability platform connecting families like mine with top-notch support workers. 

As a parent to my five-year-old son, Arlo, who has quadraplegic cerebral palsy and epilepsy, I know firsthand how hard it can be to navigate the NDIS. So I’m grilling savvy parents and experts in the disability space to find how I can advocate for my child and get the funds our family needs to live a good life. 

In this, the second episode of our NDIS Know-how series, I’ll be chatting with Linda Fenech, a beauty therapist from the Hawkesbury region of NSW. 

[Linda] People have a very different idea of what a beauty therapist is. So for me, I just make people have confidence in themselves. So I don’t find it as just doing eyebrow wax. 

[Melanie V/O] This passion for helping others feel confident extends far beyond her beauty salon. Linda voluntarily supports more than 40 parents as they navigate the NDIS, sharing with them what she has learned as a fierce advocate for her own daughter, seven year old Lucy, who has cerebral palsy.  

In this chat, Linda and I cover a lot of ground including the importance of framing your child’s NDIS funds as an investment, bringing video evidence to your NDIS planning meeting, and including a Carer Impact Statement in your plan material. I hope you find this conversation as enlightening as I did.   

[Melanie] When you’re working, so beautifully, with all of these parents, what is the number one thing that parents stuff up in their NDIS planning meeting, or in the preparation for it? 

[Linda] Not matching their goal to their actual funding. To their therapy. I see it in black and white, right at the beginning. 

 [Melanie] So say I’m a new parent, newly diagnosed kid, coming to you and saying, I have to do this NDIS plan, how do I do good goals?

[Linda] Okay so first up I look at their ability, where they should be sitting, and they write the goals to that. So you can give me an example and I’ll tell you how I’d write that for that person.

 [Melanie] Let’s say Arlo. So when we first got on the NDIS, Arlo was, I think, two years old. And he’s level five on the GMFC. 

 [Melanie V/O] I’ll interrupt myself here to quickly explain that what I mean by GMFC is actually GMFCS, the Gross Motor Function Classification System.  

[Melanie] So quite profoundly physical disabilied but a bright kid.  

[Linda] Okay, so at two it’s really hard because you don’t know where the level is going to sit at. We really don’t know levels until four. Two to four is when we’re actually starting to plan it. So honestly you have to treat Arlo as if he’s neurotypically going to be a level one or two. 

He still has to have the same opportunities and expectations as what any child has. There needs to be movement therapies, music therapy. Animal therapy, all of those sorts of things that could stimulate brain activity to register a different pathway is where I’m pushing for. So our goals would be from two to three, what would be happening in a neurotypical child from two to three? 

 But say he was six. He’s six now, did you say? 

[Melanie] He’s five. 

[Linda] He’s five now, and he’s a level five, and he’s going to school next year and he’s a very bright child. What sort of devices and different things have you got funded for him? 

[Melanie] We have the lot. So we have an AAC eye gaze device, we have wheelchair, we have stander, we have walking frame, Rifton Pacer gait trainer. We’ve got lots of cool stuff for him, we’ve been very lucky.  

[Linda] And do you know what, a lot of people don’t know how to actually obtain that, and you have very, very  ood OTs and physios that actually put those plans in place. 

 [Melanie] You’re so right, so much of the reason we got a good plan for Arlo is because we have these incredible therapists that have written very good reports. What advice do you have generally, for parents, about how they should pick good therapists? What are some signs of a good therapist that they can look out for? 

[Linda] There’s two. There’s two, actually. One, they have to be able to connect with your child, and your gut feeling as a parent will tell you that. There’s nothing else other than that. You know when they say animals and children can sense the good in people, that is the first step. You can sense that in someone.  

And two, it is somebody who engages with you and explains to you everything that is the possibility, and sits down with you. Even if it is half of the actual therapy, and sits down and says, this is what we’re going to do. Not just writes a plan, passes you off and it’s really quick. And you have that real faith in them. 

[Melanie V/O] I completely agree with Linda here - and have also learned the importance of being able to move on, swiftly, from a therapist you’re not vibing with.  

[Linda] I don’t think you have to be scared of firing your therapist. 

[Melanie] No, and a good therapist - or, you know, a stock-standard one - will completely understand that it’s just the way of it. 

 [Linda] They will know, too. They will understand if they really want the best thing for your child.  

*** Middle music *** 

[Melanie V/O] During our chat, Linda also mentions that in your planning meeting, it can help to argue that providing sufficient funds for your child now will save the government money in the long-run.  

 [Melanie] How do you put that into words?

 [Linda] Okay, so, I’ll give you an example for Lucy. So Lucy, she’s got left-hemiplegia. So, yes, she’s more affected on the right-hand side of the body. So I know that her walking with her leg and hip turned in and rubbing her knees, and not having the strength in one of her legs, is actually going to put pressure on her body and she’s going to need to have surgery.  

By being able to do lots of physio to actually turn out the leg and walk, with not such an ataxic gait, stops the actual rubbing. Less knee surgery, less therapies afterwards, less cost. Better for the system.  

[Melanie V/O] Another great tip Linda shared is to bring video footage along demonstrating what your child needs when they are at their worst.   

[Linda] If you’ve got Lucy in the morning, she’s better in the morning than at the end of the day when she’s tired and struggling. So if I was to have a meeting at nine o'clock in the morning, and she was present, they would actually not see the ataxic walk that is present at 1.30 in the afternoon at school when she’s falling over all the time and injures herself.  

They don’t see at nights, so I videotaped one night when she was screaming at night. I had to massage her legs, and I’m massaging her legs, and for a good half, hour, she’s going, ‘Mum, I don’t want to do any more. I don’t want to do any more therapies, I don’t want to walk any more I want to cut my legs off, I don’t want this any more’. And she’s screaming at me to keep on rubbing them, until she calmed down and fell asleep, finally.  

And that went on for two or three weeks, and I had no sleep and had to work as well, so they don’t realise the pressure that it puts you under. Which sounds really selfish, but I don’t mean it to sound selfish, it’s just really hard, and a struggle as a parent.  

[Melanie] On that as well, is it good advice to tell the planner if you are struggling as a parent? If you need more support, as a parent?

[Linda] One hundred percent. The Parenting and Carers Impact Statement is huge. You need to be writing that every single time. And the OT that I had dinner with with friends the other day, she didn’t even know what a Carer Impact Statement was.

[Melanie V/O] Neither did I, until Linda brought it to my attention. A Carer Statement - also known as an Impact Statement - is a letter written by a parent or carer of someone with a disability that explains how their disability is impacting their own life and the lives of those around them. Writing this statement is not a compulsory part of the planning process, but it can significantly strengthen your case for supports.  

[Melanie] What advice would you give to parents writing that? 

[Linda] You know when some days you wake up and you go, I’ve got this shit, I’m all good. But then on other days you’re had a fight with your partner, they’re a real shit, you’re tired, you’re exhausted, you wonder why you do this, they’re the days to write that. That’s the day, I’d keep it in your back pocket, even if your review isn't coming up for another six months, but you write most of the emotion out right then, as if it was a diary. 

Because that pain and those words that you would use and translate into them will be completely different at that time than when we’re fighting fit. They need to hear the emotion in our words of, I cannot fucking deal with this any more.  

 A struggle for me, personally, is that Lucy sits in between. So what I mean is, I don’t feel like we fit into any group. And that sounds really horrible, because she’s not severely affected, however, she has no real strong ability. So she’s not really sitting anywhere. So when people see her they’re like, where’s your disability? They don’t see that I have to carry her and the shopping and all of that when her legs get tired.  

But then I also see very little support for one of my mums who’s got a CP level five child, she’s got another four children - three children, so four in total - and I just want to hug her sometimes. And no wonder we have a glass of wine at the end of the day.

 [Melanie] Yes! I think that’s so interesting because we have a really good planner, I’m certainly realising that now, but we haven’t had to fight that hard because Arlo’s disability is so severe and significant. And I say I’m lucky, and people think I’m mad, but I say we are, because we’re not questioned. We don’t have to fight anywhere near as hard as you have to fight to convince people of what we need because it’s in plain sight.

 [Linda] I find it goes both ways. I say your NDIS plan is a lottery ticket. You might get a good plan or you might not, and it all depends on so many different variables. When NDIS works and the NDIA helps, it can be the most amazing support for our children. However, when it doesn’t work it can be the most debilitating thing that I’ve ever seen. It shouldn't be that hard for some.  

[Melanie V/O] With people like Linda sharing her knowledge and helping parents like us get more out of their NDIS plans, here’s hoping it gets easier. So many thanks to Linda, for this very insightful chat - and thank you for listening. Catch you next time on NDIS Know-how. 

*** Outro music ***

Melanie Dimmitt: Hello and welcome to NDIS Know-how, a podcast series that asks parents how they get the very best NDIS plan and ample funding to support their kid. I’m Melanie Dimmitt, a freelance writer and the author of Special: Antidotes to the Obsessions that Come with a Child's Disability.

As a parent to my five-year-old son, Arlo, who has quadraplegic cerebral palsy and epilepsy, I know firsthand how hard it can be to navigate the NDIS. But gosh darn am I grateful that this financial support is available to our family. 

Around four years ago, Australia’s National Disability Insurance Scheme rolled out across the country and for the first time, people with disability and their families received funds to be used as they saw fit - on therapies, supports and equipment.    

While still relatively new and far from perfect, the NDIS has the potential to be life-changing for families like mine. But as a participant - or a parent of a participant, like me - you’ve got to know how to make it work. 

In this, the first episode of our NDIS Know-how series, I’ll be chatting with Georgia White, a working mum whose six-year-old daughter Rosie has a rare genetic condition called Rett syndrome. 

Georgia White:  So if you can imagine the symptoms of autism, cerebral palsy, Parkinsons, epilepsy and anxiety disorder all in one little girl, that’s unfortunately what Rett Syndrome is. 

Melanie: Georgia and her husband, Tom, live in Sydney with Rosie and her two-year-old sister, Marlow. The newest member of their family is Rosie’s assistance dog, Goose. 

Georgia: He’s the most gorgeous, beautiful Golden Retriever who sheds hair like it’s snowing doggie glitter. That’s us!

Melanie: Rosie is now on her third NDIS plan - one that covers the majority of her daily therapy and significant support needs - so I was mighty keen to chat with Georgia about how she advocated her way to this happy place.  

Georgia: We are so happy with the support that Rose receives now. It’s wonderful to know that she has the right equipment and the right support that means she can be confident going to school and be happy doing the things that she wants to do. 

Melanie: That’s so good to hear. I’d really love to know your advice on preparing for and NDIS planning meeting for your child - especially for parents who are new to the space. What do you have to do, as a parent, or how can you best set yourself up for that meeting to get the funds that you need for your child?

Georgia: Probably the best bit of advice I could give anyone, which is really heartbreaking to have to do, but you really need to describe to the planner that you’re meeting with, what your child is like on his or her worst day. And, it goes against everything as a parent that we want to do.

We want to talk about our child and how funny they are and how much they’ve learned. But instead, you have to go into these meetings and you have to talk about the anxiety they have - the tantrums - their inability to look after themself. Their inability to look after their own self-care needs like toileting and hygiene. And you have to talk about how they’re not able to function in the community. 

Things like that, which is just awful, because on their best day, that’s not how they are. But unfortunately the system really needs to know how hard it can be, for you to be taken seriously. You, as a parent, listened to. And for a planner at the other end of the call or in the meeting to really get on board with the amount of needs that your family needs to really support your child. 

Melanie: Yep, it sucks that we have to do that, but you’re so right. Just in terms of things that you can kind of physically prepare - notes that you can have to hand - we did a weekly schedule for Arlo. And put, minute by minute the support he needs and the therapy he does throughout the week. Did you do something similar? What kind of paperwork or notes did you bring with you?

Georgia: Yeah,I did. I prepared a word document. It was really a day in the life of Rosie. I did minute by minute as well and it was focused on all of the support that she needed. So I did it from the moment she wakes up, she calls out for mum and dad. And I described the times that she’s waking up through the night. 

And how she needed someone to change her nappy and reposition her in bed. And lift her out of bed, take her to the living room, put her in her chair and prepare her breakfast. And take the breakfast to her, feed the breakfast to her, give her her tablets. The time that it takes for her to actually swallow her medicine. 

These are things that, it’s not like you can just walk into the living room and hand your child a bowl with weetbix in it and then leave and have a shower and go and get ready for work. I have to sit with my daughter and make sure that she chews and swallows her three tablets, plus the liquid medicine, plus the weet-bix. 

And, you know, if you look at it minute by minute, this is taking me 45 minutes a day. Yeah, 

I found it a really good document because there was no escaping what that reality was, it’s written down. And I think as a parent it also gives you confidence that, this is not normal. This is not what the average family is needing to do in their day. And that gives you the confidence to go into that planning meeting and really confidently be able to say that your child needs more support.

Melanie: Other paperwork you’ll want to be preparing for your planning meeting might include reports from your child’s therapy providers. You’ll also need to show scientific evidence of why specific intensive therapies will be beneficial for your child.

Georgia: Yes, we fought that same fight. And I learned a new skill set, searching for scientific journal articles.

Melanie: Georgia has kindly sent one of those articles to me, and I’ll include a link to it in the show notes. 

Georgia: We were sort of petitioning the NDIS from a number of different points of view. So, we were asking for funding for intensive therapies but we were also asking for funding for support workers.  

Melanie: Georgia got it. She’s now able to hire physiotherapy students as disability support workers. 

Georgia: What that meant was, because we’re self-funded, we can choose how we spend that money. So the way in which we have been able to make our funds stretch a bit further is by having formal therapy, like physiotherapy and OT, we might have that once a week. But we will pad out our week. We’ve had a physio student working with Rosie for the past year and a half. And so the cost for a physio student is a lot less per hour than a formal, fully qualified physiotherapist.

And likewise, we could have a home therapy program written by the OT and physio with simple exercises to do around the house that the support workers can follow as well. So rather than having multiple physiotherapy sessions through the week, we could have someone else do that work and make the funds stretch a bit further.  

Melanie: Yes, you get a bit creative. Would you advise then... because when we did our first plan, we were told not to be self managed. The advice that the NDIS people gave us was, don’t. And I then learned, for us, it’s been so much better to be self managed. What would your advice be there? 

Georgia: Yeah I mean look, I work as a project manager in my day job. And I guess I’m a bit of a control freak. I like to plan things out, so for me it’s a bit of a no-brainer, being self funded. But I do think that being self-funded gives you flexibility.It’s hard finding the right resources to work with your child, anyway, and so adding extra barriers by limiting who you can go with, to me just didn’t make sense. 

Melanie: Yeah, and you do get used to it. It’s a heck of a lot of admin, like I feel like I’ve got a full-time job paying invoices, applying for funds and things. But I think it’s definitely worth it for the flexibility and the control, like you say. 

Georgia: Yeah, exactly. And I think for families that have two parents at home, I’d highly recommend that the task of managing the NDIS invoicing and plan is allocated to one parent. And then you can work out all of the other worst jobs in the house, like picking up dog poo and ironing, and all of those things, and then the other parent has to do all of those jobs. 

My husband says, we’ve just got a good rhythm at the moment. And I think that’s a really good way of putting it. We’ve finally got to a point where we’ve got funding that works. We’ve got, generally, a pretty good team of therapists and support workers. It’s quite flexible, but it just is working. Which is a really nice position to be in, and without the NDIS we wouldn’t be in this position. 

Melanie: Thank you to Georgia White for sharing her wisdom on how to best prepare for and get the most out of your child’s NDIS plan - and thank you for listening. Catch you next time on NDIS Know-how.