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CF and the NDIS

In this episode of the CFStrong podcast we speak with Ben from Trusted Care, a subsidiary of CF Queensland, about the NDIS. We explore what the NDIS is, how people with CF are accessing support from the NDIS and what advice Ben has for anyone thinking about applying for the NDIS.

It's about educating people in the NDIS. That's real advocacy, helping people become educated and better equipped to understand and learn the way to speak about the NDIS, the way to approach the NDIA, the way to access all of that. It's all an education process for people. Advocacy is education in my opinion. And it's a really important part of the NDIS.

Ben, Trusted Care

Transcript

 

Voiceover: Welcome to the CFStrong Podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first-person stories, conversations with health professionals, friends and partners. Just a heads-up guests may share their personal views about treatments and health management. But please remember this is not medical advice, and you should always follow the advice of your clinic team regarding your health. 

Kirby: Hello, my name is Kirby. I’m the digital content producer at CFStrong. And I’m joined today by Ben Smith, the head of business development at Trusted Care, a subsidiary of CF Queensland for a discussion all about the NDIS. Ben, thank you very much for joining us today. Perhaps you could introduce yourself and tell us a little bit about Trusted Care. 

Ben Smith: Thanks Kirby. Yes. So, I started with Trusted Care late last year. So, Trusted Care was created by Cystic Fibrosis Queensland, and what they saw was a need for NDIS service provisions within the cystic fibrosis community. So how it’s broken up into work with the cystic fibrosis community is that the service provision side of it, so our support services and any direct service that we work within the NDIS and with participants, it’s rolled out across the whole of the NDIS sector.  

So, any person can work with Trusted Care. However, at the same time, a lot of our services are aimed at the cystic fibrosis community. So, when the idea was first created, and when it was implemented, a lot of the services, which is a little bit of a mishmash of services for a provider, it was actually based on the cystic fibrosis community and the needs in that area.  

So, all of the revenue that’s raised through Trusted Care goes directly back into the charity, Cystic Fibrosis Queensland. And aside from the NDIS service provisions, there is a lot of work that goes on within the cystic fibrosis community around the advocacy to actually access the NDIS. 

So, unfortunately for a lot of people with cystic fibrosis, it’s been a struggle to actually access the NDIS. So, what Trusted Care, what myself is here for is actually to create a bit of an avenue to gain some understanding around the NDIS. Not everybody with cystic fibrosis is going to be able to access the NDIS, but there is a really large cohort that should really have access there.  

So, it’s working with the community to kind of give them a little bit of a better understanding around the NDIS, and what improvements in their life they can actually gain from NDIS funding. 

Kirby: Let’s talk a little bit about the NDIS. I’m going to ask you a really big question so, feel free to give me a very simple answer. What is the NDIS? 

Ben: The NDIS, well, it’s an acronym, the NDIA love in acronyms. So, the NDIS is the National Disability Insurance Scheme. It is overseen or governed by the National Disability Insurance Agency. So many years ago, the disability services were governed state by state. So, each state had their own disability funding, and they would grant those funds to various providers within their own state.  

The NDIS is a federal scheme. So, it works in every state and territory, and it doesn’t matter what state or territory you are in you actually have the same access requirements. You have the same level of funding where required and you have the same ability for services. So, the NDIS, what it’s been implemented for is to gain a greater access for appropriate services for people with disability. So, for many years, a lot of people using disability services would go to a provider and it was called disability lotto back in the day for a lot of people.  

So, where you lived, those were the services that you were allocated, and you were allocated certain services by the provider. Now, that funding is actually given to the participant directly, while they aren’t given these funds, it sits still with the federal body. The NDIS participant now can actually go out and source their own services so they can use their funding the way they best see fit for them individually.  

So, the NDIS is based on goals. So, goals are your short-term goals, your medium-term goals and your long-term goals. And they could be as far reaching as wanting to go out and rock climb, get out into the community. It can be a number of things, and what the NDIS funding does is basically it’s a road between the impairments for the individual or the participant and those goals. The NDIS funding links those two. So, it was rolled out from 2016, it was fully rolled out in 2019. It was rolled out state by state and area by area and now half a million people within Australia access the NDIS. 

Kirby: And you sort of mentioned it before, but what’s the sort of situation with cystic fibrosis and the NDIS, what’s the situation around access to the NDIS for people with cystic fibrosis? 

Ben: Yeah. So, cystic fibrosis, it’s a chronic illness, and for a lot of people unfortunately they fall in between the gaps between a healthcare system and a disability scheme. While a person with cystic fibrosis is in hospital, they get all of the coverage required for them medically and therapeutically while they’re there. Once they leave the hospital, a lot of the time they really don’t have a lot of that access to therapies that are required for people with cystic fibrosis.  

What I say to everybody is that it’s not necessarily the cystic fibrosis that you are looking to gain access to the NDIS for, it’s actually the impairments that come with it. So, with the large amount of research that’s going into cystic fibrosis these days, there’s a lot more impairments that have been found and a lot more problems that are found with a person with cystic fibrosis ongoing. And those are the things you look for access for NDIS funding with. Previously, there seems to have just been a blanket rule over cystic fibrosis that people weren’t eligible to gain access to the NDIS. When realistically, a lot of their impairments fit in line with what the funding is there for.  

So, it’s been a difficult time for a lot of people in the CF community that have tried to gain access. They’ve tried to gain access on numerous occasions. And what we’re trying to do now is really break down that door to be able to allow people with impairments that qualify for the NDIS based on those impairments to actually gain access to it so that they can actually get the required therapies and the required treatments that any other person under the NDIS can access. 

Kirby: And so, are people with CF accessing the NDIS? I mean, you were talking there about getting access, not maybe because of CF, but because of things related to CF or how CF restricts or impairs somebody’s life. So, are people with CF accessing the NDIS and if they are, how are they doing that? 

Ben: Yeah. So, realistically at the moment, people with cystic fibrosis that are accessing the NDIS are accessing it for what’s called a comorbidity. So, a person with cystic fibrosis is more likely to have a psychosocial issue or problem. And that’s what they will gain the access to the NDIS for. So, we have a couple of people in the CF community that have comorbidities around intellectual impairments, autism, things like that. And that’s what they’re gaining the access to the NDIS for not specifically for the cystic fibrosis.  

So, there are people in the community they’re able to access it, but they’re not directly accessing it for the impairments related to the cystic fibrosis at the moment. It’s really around those comorbidities. And it probably is predominantly around the psychosocial access for people. 

Kirby: And what are some of the challenges in the process? I think broadly as a community, we have some understanding that the NDIS is not necessarily an easy to navigate scheme. So, talk to me a little bit about the challenges that are a part of the process of gaining access to the NDIS. 

Ben: Yeah. There are a lot of challenges. So, a person looking to gain access for the NDIS for any disability can find it challenging. There’s a lot of paperwork and there’s a lot of evidence. So, if you think of the NDIS, it is an insurance scheme and insurance is based on evidence. So, when looking to access the NDIS, you’re actually evidencing your impairments and the disability you have and that can take a long time to actually gather that information. It can take a long time to actually gather the appropriate information for the NDIA directly, because the NDIA, they look at things individually. They do look at things individually, but they do have a lot of access requests and they do have to have a broad understanding around a lot of different areas of disability, the people that are actually making these decisions. 

So, there’s a lot of back and forth a lot of the time if people aren’t, if people can’t gain access the first time there are actually review options that they can go through. So, it can take quite a while even just to get to the access part filling out the form for access, gathering the information to go along with that access can take three, four or five months, depending on how quickly you can get into an occupational therapist or a clinician, or the people that you want to help with your evidence. Especially healthcare professionals or medical professionals at the moment there’s a real backlog of OTs and a lot of other medical professionals around Australia, and it is taking quite a bit of time to actually get the necessary documents just for the access request.  

And then, also trying to create the evidence, that it’s based on the impairments as well. So, as I mentioned earlier, cystic fibrosis, it seems to have had this kind of blanket approach where it’s just a medical issue. Actually trying to structure your evidence and structure everything you are doing to access the NDIS towards the fact that there’s all these impairments that aren’t going to be treated medically, or they can’t be treated medically, it’s actually through therapies and therapeutic supports. 

It’s challenging to anybody trying to access the NDIS, let alone our community of people that have found it very difficult for years and years to actually kind of break that door down, to actually have the ability to even look at accessing the NDIS. So, it’s a pretty stringent process, but that’s for a reason. The people that have access to the NDIS are eligible for it, require it for a reason. So it is a very, very stringent process, but very challenging. 

Kirby: And we’ve mentioned a little bit that it’s not always a straightforward process for people with CF to gain access to the NDIS for lots of different reasons. What’s kind of happening around advocacy for getting CF included on the NDIS, is there anything happening there? What’s the conversation there? 

Ben: So, it’s a difficult one because the advocacy isn’t necessarily around kind of getting CF on a list or getting people with CF automatically qualified things like that. It’s literally case by case. The advocacy works individually essentially. So, for myself, I’ve got quite a lot of experience within the NDIS. So, I very often work with people individually to help them understand the access requirements and kind of guide them through that access stage to allow them the ability to try and gain NDIS funding. We are working with different advocacy bodies as well around different areas of Australia to look at ways that we can kind of better equip people with cystic fibrosis to, to gain access to the NDIS.  

So, we’re trying to put cystic fibrosis at the forefront of people that have the ability to kind of help the way people think about the NDIS and cystic fibrosis within the NDIS. For me, I’m obviously a big advocate for cystic fibrosis, but it’s a no brainer for me, that people with cystic fibrosis should have access to the NDIS especially for a lot of their impairments.  

As I said, not everybody with cystic fibrosis will gain access to it because they won’t meet the requirements, but there are a very large cohort that can and should access that. And the way we advocate is we work with as many people as we can to help them gain access, because in a way that is advocacy, because once you get an understanding around what works to help people frame their conversations and their access requirements to gain the NDIS funding, then from there, we can use that as a template, and we can use that for other people in the same situation to actually help them and allow them to gain the access.  

Kirby: Is part of the work in this area about equipping people with the information and the knowledge of how to, I guess, speak NDIS to put it plainly, about giving people those resources so that they can make that application and perhaps streamline the process a little bit, because they know what they need to do? 

Ben: Definitely. Learning the NDIS language is vital. They love an acronym. So if you speak with someone from the NDIA or you speak with a person that works within the NDIS, a lot of the times they will kind of speak in what will sound like a completely different language. So, allowing people to understand those acronyms, the way people talk, and the way people think about the NDIA, or the NDIS, sorry.  

We actually do that through online webinars with people. I do from very basic, what is the NDIS webinars to kind of a little bit more involved in the access requirements and what people look for in that. And it’s about educating people in the NDIS. That’s real advocacy, helping people become educated. And as you said, better equipped to understand and learn the way to speak about the NDIS, the way to approach the NDIA, the way to access all of that. It’s all an education process for people. Advocacy is education in my opinion. And it’s a really important part of the NDIS.  

I’ve worked in the NDIS from before it rolled out in Queensland and I’m still learning every single day. And I know a lot of people out there do the same thing, and there’s some fantastic educational tools out there for people to actually learn about the NDIS and holistically understand the NDIS not just from the start. People go on journeys through the NDIS but in terms of the access side of it, and the general understanding of the NDIS that’s really what I’m working on through the webinars, and when I work with people individually on that. 

Kirby: And what would you say to people with CF that were thinking about making an application to the NDIS, what would your advice be? 

Ben: Yeah. What would my advice be? I’d speak to as many people as possible within the NDIS providers. I’d speak to people that have gone through the access request stage as well. If you have the opportunity—that’s the thing, if you’ve got the opportunity to do that, definitely do that. Everybody’s got a different take on the NDIS. Everybody sees things differently.  

I commonly say that the NDIS is 5% black and white and 95% grey. And that goes for everybody when they view it. So, if you are thinking about making an application, then speak to people about it, speak to your clinician, speak to your GP, speak to any of your therapists about it. Definitely come and speak to me. I’m more than happy to speak to anybody about the NDIS. I’ll talk about it all day.  

Don’t be scared to ask questions. Don’t be scared to find out the process because it is a challenging process. It can be a really exhausting process, the access side of it, but the NDIS is a wonderful scheme and what it allows people in the disability community to now have access to, and to build their capacity and their independence is fantastic. It is a fantastic scheme. And if anybody’s thinking about making an application, definitely make inquiries and speak to people about it. 

Kirby: Yeah. That sounds like really great advice. I think if you can talk to somebody who has been through the process before, gain some insights you are sort of five steps ahead already, aren’t you 

Ben: Definitely. It’s always good to know that if somebody’s gone through the access request process, they can actually give you some feedback along the way. They can—as I said, it can be exhausting. But the end goal is you are gaining the funding. You’re actually going to be able to use that funding for, it’s going to build your capacity to be a lot more independent and to do lot more things that you want to do. The NDIS it’s about living your life, and what that means to every single person is completely different. But yeah, as I said, I can’t talk up the scheme highly enough.  

I think it’s a fantastic scheme. I’ve seen some fantastic results from the scheme myself. That’s why I talk so proudly about it. And it’s something that will evolve over time. It’s evolved over the last five years, and it will continue to evolve but it’s heading in the right direction. And it’s changed a lot of people’s lives in this country. 

Kirby: Wonderful. Thanks so much, Ben, it’s been so great to chat to you about the NDIS and how people with CF may be able to navigate that and perhaps gain access to the NDIS. Where can people find out more information about Trusted Care? 

Ben: Yeah. So they can go to the website. So, www.trustedcare.org.au. They can also send an email through to services@trustedcare.org.au, and I’ll pick that up and be in contact. As I said, any questions at all, get in contact with me more than happy to chat to anybody about the NDIS. 

Kirby: Excellent. Thanks so much, Ben. Thanks so much for joining us on the CFStrong Podcast. 

Ben: Thank you very much. It’s been wonderful. Thanks. 

Voiceover: Thanks for listening to this episode of the CF Strong Podcast. Make sure you subscribe on your favorite Podcast listening platform, so you don’t miss the next episode. And if you enjoyed this Podcast, we’d really appreciate it if you could leave us a review, it helps other people find CFStrong or share us with your friends. Also, a quick reminder that the views expressed in the CF Podcast may not be reflective of Cystic Fibrosis Community Care’s viewpoints.  

The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian government and was produced by CF Community Care and CF Western Australia. Our theme music is spark of inspiration by Shane Ivers from Silverman Sound. Thanks for listening and we’ll talk to you next time. 

 

Trusted Care is a subsidiary of CF Queensland who provide NDIS support to people living with cystic fibrosis. For more information about Trusted Care, you can visit their website or call them on 1800 670 990 or email them at admin@cfqld.org.au

 

This podcast was published in July 2022. If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our listeners.