National Disability Insurance Scheme (NDIS)
Part 1, 11 June 2019
In part one of this two-part special on the National Disability Insurance Scheme (NDIS), we talk about getting access to the NDIS and setting up a plan to achieve your goals.
We speak to stroke survivor Pip Murray, whose plan is helping her get back to activities she enjoys, to NDIS Local Area Coordinator Bree Lowther, and to social worker Siobhan McGinniss from StrokeLine.
Part 2, 31 July 2019
In part two, we ask what you can do when things don’t work out right and how you can appeal, and then what happens after you’re on the NDIS including managing a plan and service providers, and going through an annual review.
We speak to stroke survivor and author Emma Gee, who had difficulty getting onto the scheme, to NDIS Local Area Coordinator Gabriela Obbiettivo, and to Carol Pham from StrokeLine.
Part 1 | Part 2 (below)
Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your health care professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.
Chris: [00:45] The National Disability Insurance Scheme, or NDIS, was famously called Australia's biggest social reform since Medicare. It is meant to help people with a disability achieve their goals and enjoy life. Being so big, the NDIS is not without its problems, but many people are still getting positive results from it with real benefits for their lives. In this special two-part podcast, we're going to speak to people who work with or use the NDIS about how to get the most out of it.
In part one we'll talk about getting access to the NDIS and setting up a plan to achieve your goals. We'll speak to stroke survivor, Pip Murray, whose plan is helping her get back to activities she enjoys, to NDIS Local Area Coordinator Bree Lowther and to social worker Siobhan McGinniss from StrokeLine. And then in part two we'll talk to someone who's a bit further down the track and find out what you can do when things don't work as smoothly as expected and how to keep getting what you need from your plan through its annual review.
But first, as I said, we have on the line, Pip Murray. Pip lives in South Australia's Barossa Valley and she had a stroke about two and a half years ago. She's become an expert at finding the right supports to get her through the health and disability sector, and she has been on the NDIS for about a year now. Pip, welcome to the podcast.
Pip: Hi. Thank you.
Chris: [01:55] Now first of all there's a question that we always ask stroke survivors we have on, could you tell us your stroke story?
Pip: Okay. My stroke happened actually three years ago now, and I had my strokeversary yesterday. It was Easter in 2016, I was sailing, massive sailer I am, and I was in the Gulf in South Australia doing some races there for Easter, spent the day doing normal activities. I was quite a fit person. I used to do the gym regularly and eat properly, did a 5k walk before a race. Hopped on the boat and out we went into the Gulf to do our race, did the race. It became becalmed at one stage and didn't think anything of it. Got up to put the spinnaker on the side because we were going to have a downward wind.
And I was walking back to the bow of the boat, and I actually got hit by the boom of the boat, but didn't think anything of it at all. I was a bit dazed, didn't think anything of it. The following day, action replay, and we were out racing, and I finished the race, was packing up the sail and down I went... I turned around to talk to someone as I was doing the sail up, but I realised that I couldn't do the zip up and thought that was a bit odd and lost my footing, and the girls arrived, I lost my balance. I did lose my balance, I lost everything on the right hand side of my body. And I looked over at one of the crew members to say something like, "I'm in awful trouble here", and that's when I realised I couldn't talk, and that's when I realised I had an actual stroke.
The crew were very good, I had lots of doctors and lots of nurses on board so they knew immediately what had happened. So, they put me in some position, coma position, I think they call it, and called in to the main squad that it was Mayday, Mayday, that they were having problems with me and that I needed medical assistance. And I was helicoptered into the RAH at the Royal Adelaide from the Gulf.
And there they did an MRI and worked out that I'd had a haemorrhage stroke. And because it was a holiday, all the specialists were away on holidays and no one was game enough really, I think, to go in and clip it off because I was quite conscious, and it had basically finished. The disaster that had been done, so that's my story. And from then on, the following day was my birthday, congratulate me. And I started rehab from then on.
Pip: And now I haven't stopped and won't stop until I'm at my best, I think.
Chris: [05:48] Well, how did the stroke affect you in your daily life, and the things that you could do?
Pip: Initially it was very traumatic, because I was right in the middle of BASes. I'm an accountant, and I had lots of clients that I do BAS forms for and so I had to call upon other people to do them for me. And physically, it affected all my right side that didn't actually come back to, any... Lots of people lose the strength on their side and then might gain it within that week, but no, it's taken a long time to recover.
I started off in the wheelchair and being airlifted onto commodes, which was a bit traumatic because I've never been in that kind of situation before, where I had to call on people to put me onto a toilet. They all said that I was very lucky that I was able to be continent, whereas a lot of people aren't in my position.
And from there, I learnt how to stand, then to walk with a tripod, gradually moved to a walking stick. And then I went on to... Now, I walk without a walking stick. Any distance, anything that's too long I use the walking stick still and if there's crowds of people, I take my walking stick, it's a bit of a warning to other people that I'm not good on my balance still. It has affected me because I haven't been able to get back to work, and I'd like to.
I lost lots of friends through this because I mostly was physical with my previous life. I sailed madly and also at the gym and played tennis if I wasn't sailing. And because of that, you tend to lose contact with people. I still go to tennis and socialise with my sailing group, and my tennis group, but I don't see them as often as I used to.
And people, who you think are very good friends, we tend to lose contact with them, it's a bit weird. And I still can't quite work out why, but that's okay. I think they have the problem more than I do. What else happened? My children weren't quite sure how to accept me. I think people in general... my children are fine now, but, people in general when they initially see you, they think because you're physically incapable that you're mentally incapable as well. And it's not until you actually start the conversation that they realise, “Oh, gosh, she's actually quite with it.”
I lost my numbers when I first had the stroke, and my mother's been wonderful. She's taught me how to add up and subtract up to a hundred and backwards again and learn the numbers initially. And I'm now, in a month's time I actually commenced work, which is great. And I'm starting a very basic junior accounting position again, which is really very good. It's taken me three years to get here, and I'm thrilled about my rehab to be able to do that.
Chris: That sounds like a huge step.
Pip: Oh, massive.
Chris: [09:45] I guess one of the things that you've also done here is, you found new connections and required new support to help you achieve things. And this is something I want to ask about is, I understand the supports were helpful for you in getting onto the NDIS. Can you tell us a bit about how all that worked?
Pip: Yeah. Well, initially when the NDIS was coming into fore here in South Australia, I was with Disability SA. I was one of their, I guess users, and they gave me a scholarship to go down to Brain Injury SA to do physio, OT and speech therapy because I couldn't talk very well, and I still have a bit of a lisp, but it's not as bad what it used to be.
And in came in the NDIS and everyone looked at me, and they said, “Pip, you need to get onto this.” So, the girl that was my, I guess manager of my plan with the Disability SA, she was the prime person to do most of the hunting and gathering of information I'd called her. So she gathered information from my other allied health people that I used, other than what was in this Brain Injury SA.
And the Brain Injury SA manager organised all the information from the OTs and the physios and the speech therapies within their group to help organise and set up a plan for me. And then, the NDIS... We had to wait until we got a phone call from them after our initial application. And they rang me personally, and I set up a interview Brain Injury manager, my manager from Disability SA, and my brother, he was my rep personally because he organised all my finances because I couldn't do the numbers. He took over my books and paid my bills, so therefore he was included in the plan.
Chris: [12:22] Okay. What sort of services were included in the NDIS plan?
Pip: Well, initially, I had carers from Disability SA, so we kept them, plus the hours that I have for them because I have carers that came in the morning and at night, and I'd have people taking me to do shopping and to take me to physio, or they also did, what else did they do, the carers? They helped me in the garden because I've got a massive garden. And I also personally paid for a cleaner and a gardener. So we put them on, and I only needed that after this, so we've decided that that wasn't a requirement.
What else did we have? We had the physios and the OTs on there. The number of hours that I spent at Brain Injury, we're trying to replicate that with the NDIS. And I could drive locally, but I couldn't drive down in Adelaide, I still find it difficult. It's too much information coming in front of my eyes, so I need someone to drive me down. With Disability SA, they organised a bus, so we'd go down on the bus with Disability, but NDIS don't provide any of that. And so you have to have a carer, or some kind of transportation allowance in there as well, to get you down to your allied health or whatever services that you were going to, so that was included.
I was still in the wheelchair initially, and so we had repairs and maintenance on equipment that I had from Disability SA, provided the wheelchair, and what else did we have? We had a trolley in my kitchen, and I can't think of anything else. But if I needed anything, we set up a budget for just in case we needed a piece of equipment, and if any of the physios or OTs thought that there might be something required in that year, they actually put it, submitted it in their plan that we presented. What else is in there? I think that's it really.
Chris: [15:07] It sounds like quite a bit there. It's interesting talking about the budget there, because I understand there is quite a bit of administration that comes with these plans, particularly when there are so many things involved in them and there are different ways to manage them. What sort of setup do you have for managing your plan?
Pip: Well, initially because I couldn't do the numbers, we thought that James might takeover my plan. And...
Chris: That's your brother, is it?
Pip: That is. When we were talking to the NDIS plan manager for myself, she suggested that wasn't really quite a good idea because he wasn't close by to be able to maintain that whatever carer's hours were correct. And I was still learning my numbers, so that it wasn't a good thing for me to take on at that time. I had coffee with a girl up here who had been on the NDIS, and she suggested that I try My Plan Manager, which is an external group of people and quite, they have an app that goes on your phone, and you send them by your phone a copy of the invoice, and they pay it after lots of verification. So we thought we'd give that a go.
Everyone that I've worked with after receiving my plan, loves My Plan Manager because they actually pay them within the two, three days, although they're getting a bit busier now, and it's about four or five days. So, I'm glad that I actually did that. It was a small fee to pay and we included that in the plan as well for them to manage the payments.
Pip: I highly recommend My Plan Manager because I really have had very little glitches with them at all actually. They've paid people on time and everyone's been happy. The initial setup of each person though it just takes a bit longer than the three to four day payment.
Chris: [17:37] And with the whole, the services running under your plan, do you reckon they have made a big difference to your life?
Pip: Oh, I'd love to kiss whoever organised it really because it's just been the best thing for me. If I didn't have... I like it because I can actually say, and next time I think my numbers are going to be good enough for me to take over the whole plan and do the payments as well. But at the moment it's just been like, I would never be able to go to select who I want to go see. Like, I've got this wonderful physio that I absolutely love and adore, and I don't think I would've ever found her if I hadn't had the NDIS, because I would've continued to use the Brian Injury SA services.
I decided, when I was with Brian Injury, they had a physio I would go in, and they had students there, and it was one of the teachers, she looked at me because I used to love using me because I could listen to the students and do whatever they said. And if they were wrong, I still did it, just to prove that they were wrong in their method, and the teacher loved me. And she said, “Do you know, you should do Bobath physio," and find a neurophysio here in Adelaide that does Bobath.
And I said, “Well, who would that be?" And she said, “Well, I know one.” And she gave me her name and I'll tell you, ever since I've been with this girl, she's been marvellous. And I won't give her name out because I don't want her to get busy.
Pip: It's been wonderful really, because I went to her with a thick stopper on my walking stick then, and then we went to just a normal walking stick and now I'm without a stick, and it's only when I'm in crowds or going more than a short distance that I use the stick with me, just in case I fall. Which is wonderful.
Chris: [19:52] It sounds like with these kind of improvements and also with things like the work you're about to start, that your goals and what you require are changing. What are you hoping to get in the next phase of your NDIS plan?
Pip: Well, the plan this year covers me to be able to get back to work, which I've just done, I've managed to get myself a job, which is terrific, so that goal is gone and maybe to keep it would be a good one. And the next, so my goals this year was to get a job, to be able to walk a bit further than, I'd to walk faster than I am, at the moment, I'm still quite slow. So that's my other goal. The other goal, I'd like to be able to count up to a thousand. I can only count up to a hundred really well and 200 okay. I'd like to be able to count backwards fast again. So yeah, they're my goals.
Pip: Seem simple don't they, but very important to me. Well, you've got think I've gone from not taking an hour to walk down my corridor, to now I can do it in a few minutes, a minute or two. That's a huge improvement over the past three years, but it's only been in the last year that I've managed to improve more so and that's because of the NDIS, I swear by it, it's been wonderful for me.
Chris: [21:35] That's really good. Now what other advice would you give then for people who want to get the most out of the NDIS?
Pip: They need to plan what they want with their goals and really work at. Like a lot of people don't work for improving their rehabilitation. They tend to... It's more social then, and a lot of people using the NDIS for social stuff. I use it for... I pay for my social stuff, but I use the NDIS for my physical and mental improvement. And I work for... People need to plan, talk to lots of people, get things written down on paper to help them get the most out of the NDIS.
Pip: It's really important, that you talk to all of your allied health, get them to write on paper what you need.
Chris: [22:46] Well, thank you very much for sharing that experience and that wisdom with us, Pip, and it's great to hear such a positive story.
Pip: Oh, I love them. I really do. I think it's a wonderful system and I can't fault it.
Chris: That was stroke survivor Pip Murray.
Announcer: [23:02] Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals, like getting back to work. EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you are progressing and celebrate your successes.
You can also connect with other people who set goals similar to yours, and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.
Chris: [23:41] Our next guest is Bree Lowther, who works for Mission Australia as an NDIS local area coordinator. Now what's a local area coordinator, you might ask? Well that's exactly what we're going to try to find out. Bree, thanks for joining us.
Bree: How are you?
Chris: [23:54] I'm very good, thanks. Now I mentioned we need to find out what a local area coordinator is. So could you please explain what your role is and what is your relationship to the NDIS?
Bree: First of all, our role as an area coordinator, we actually work alongside the NDIS and the NDIA, and we were employed as partners with Mission Australia to be able to assist with supporting people to actually access the scheme and basically get onto plans. And once people have actually been identified that they're able to get funding, we are the people that help link into services, like mainstream services, as well as supporting people to get the best out of their plans.
So basically we're the come-to people, so if you actually end up with a plan, you'd come and link in with your local area coordinator and then we're able to give you all the information of all the services that are available, whether they're actually allied health services, whether they're social group, we're able to help problem solve. We actually link people in with plan managers.
So, we're pretty much, well, we're a bit of the ant of the scheme I sort of figure, because we've got our thumbs in a lot of pies, and we're also the person that actually links the participant between the actual scheme and the NDIS, you have a delegate that actually will build the plan. What we do is we're that person that becomes that contact person for the actual participants, so they're not having to ring 1800 numbers, and just talk to someone random. We become their person for contact, so it's more of that face-to-face and personal attachment.
Chris: And I'm sure like ants you carry a lot more than your own weight as well.
Bree: Yeah, very much so.
Chris: [25:40] Just quickly though, you did mention NDIA and I just want to clear this up. So, we hear the NDIA and NDIS as two terms that people might hear, what's the difference between the two of them?
Bree: The NDIA is the actual agency itself, that's who employees the delegates, and then the NDIS is actually the scheme. So, that's the actual funding of the NDIA.
Bree: So, that's the two differences.
Chris: [26:08] I am going to ask a few more basic questions I'm afraid, because we are trying to cover, I suppose, the basic understanding of the NDIS. One of the questions, I suppose the main ones, is when is someone eligible for the NDIS?
Bree: So, what happens is, if someone feels as though they've got a disability and they would require the support that the NDIS is able to provide, they would actually fill in what we call an Access Request Form. And what you have to determine with that form, or what the form does actually determine, is it determines whether they actually meet the criteria of the NDIS scheme. And it's basically around where they live, their age, whether their disability's ongoing and the functional impact that disability has on the person with their everyday life.
Chris: [26:59] When you say the age, what is the age range for the NDIS?
Bree: You can get onto the scheme leading up to 65 and then once you're over 65, you then are into the aged care sector. So, if you actually come onto the scheme before 65, you have a choice to be able to stay on the scheme or swap into the aged care sector.
Chris: [27:13] Once you get on the NDIS, what sort of things is it meant to fund?
Bree: First of all, with local area coordination, what we're very, very good at doing is looking at what services are actually available for people that are what we call in the mainstream, so that's actually out in the community. So, we like to link people in first to non-funded supports if we can. And then we actually explore what funded supports the person needs as well. So, for instance, if you needed, say some psychological support with counselling, you can actually go to your doctor and actually get some sessions through, like referral. So that means that frees up your actual CB daily activities, the therapy funding, to be able to then use in other areas, so it's about identifying what the person needs.
So the type of things that we actually fund is, we fund transport assistance, and around the transport assistance, once again, there's a criteria set to that and there's different levels of transport assistance depending on whether someone's working and volunteering, how many hours. It obviously goes up and increases because their needs are more for their transport requirements. We support money, with in-home support as well as community access. So, like Pip had explained before, we're able to fund people to come into people's homes and support them with meal, learning how to prep meals, support needs around personal hygiene, it's around what that person actually requires.
But we also are able to fund access in the community, so that can be being supported to go out to different groups and activities, as well as shopping, attending actual appointments. We fund supported employment, so people can actually get back into employment, but once again, there's a criteria with that. So, some people, if we feel that supported employment isn't ideal we then actually assist them to actually engage with DES employment services, which is your mainstream.
We fund allied health, which like Pip had said with her rehabilitation, it's around occupational therapy, speech therapy, a range of different therapists, assistive technology, which is around prosthetics for people, it's around wheelchairs. It's all that type of technology that's able to assist the person. It's the funding regarding that with your maintenance and repairs. We fund home modifications, car modifications. Once again, criterias, obviously.
Plan management costs, so people are able to employ a plan manager to be able to pay their bills, and that gives that choice and control and flexibility in what services they're able to access. And we're also able to fund tenancy support, which is around being able to assist people to be able to continue in their tenancy, and that's once again around employing a cleaner or yard maintenance. So they're able to meet their tenancy agreements.
Chris: [30:36] So, it sounds like there is a range of things that might get paid, like you said through other services like Medicare for the mental health plans, or mainstream employment services, or even things like the disability support pension I imagine. But this is, I guess other things specific to their disability and living their life, is that right?
Bree: Yeah. Because I've got to try and explain this to people what we do, and I always explain that we're like the mortar in between the bricks. You've already got services that are already in place, like you've got the mental health sector, you've got the aged care sector, you've also got like Medicare, you've got disability which is us, in the sense of funding for support. But then you've also got things like your employment. And what we do is we come in between all that and we support the person where their disability impacts on their life. And we don't fund where there's already funding that's available.
Chris: [31:35] Okay. Now getting back to applying for the NDIS, you said that people need to fill in an Access Request. How do they go about doing that?
Bree: Well, what they would do is they'd find local area coordinators close in their area, or they're able to go to the NDIS office themselves, and then what they would do is they would have a chat about what their personal condition is. And then that decision is made around whether it's medical or whether it's a disability, because there's two different factors there. And then what we do is we support the person to then be able to access the scheme. So, we're able to sit down with the person, as local area coordinators, and assist them to fill out their part of the forms. The other day I assisted a person to be able to get their birth certificate, because reality is if you don't have your birth certificate, you really can't go forward even with Centrelink payments.
So, that's what our job is, is linking people in. And then what happens is the form then gets taken to the person's doctor and then they'll actually fill in their relevant areas and it's around what the capacity, like where does their disability affect them in their day-to-day life. What effects on their capacity? Like, do they have problems accessing the community? Have they got physical disabilities that impact on their ability to access the community? It's around that sort of stuff, but it's also then evidence-based. So, that's when we need to have the copies of the reports from the professionals that can back up that information, and then it's forwarded onto the NDIA and then they make that decision.
Chris: [33:18] Clearly, people like yourself, local area coordinators are very helpful here. How do people find someone like yourself?
Bree: Actually we have a lady that's employed to be able to actually go out into the community, she's a community engagement officer, and her job is to go out to the library where, I don't know if you know Mount Gambier, but there's a place Lucindale, they have the big field day and that's around all the farming and all the communities around farming. It's a huge big day. We had a presence down there. So, we are going to all different sorts of community groups, getting ourselves out there, so then people are aware that we're here and then they're able to come in for that support. So, it's one of those things that we're getting ourselves known and out in the community, so then people know, okay, this is what we do. This is our role, we're linked in with NDIS, we're able to come and be supported to then be able to get onto the scheme.
Chris: [34:15] Now, about a third of stroke survivors are going to have some problems with things like, speaking and understanding or reading and writing, what sort of support is available for people with communication problems like that?
Bree: What we do is we actually employ... Because it's not only that, we've actually obviously got people that come from different nationalities and different backgrounds. So, we actually have interpreters we're able to contact, we've got people that are able to sign for people that have got hearing impairments. It's around providing documentation that's in an easy-read format, sometimes it's around having that support people coming in to be able to assist the person, because they know that person the best, to be able to assist around forwarding the information. And we also support people to be able to allocate a nominee and that nominate can be for a time frame.
So, like for instance, with Pip, with her brother, we could have actually put her brother in as a nominee because she trusts him and he knows her and has her best interest. But we can actually put a timeframe on that, so it could be that he's in place for 12 months and then after that timeframe that can be removed because her rehabilitation's obviously made her be able to have more functionality and then she's able to go from there. So, it's really flexible, but there's a lot of support that we're able to put in place to be able to help people.
Chris: [35:40] You mentioned Pips' story, now she also clearly had a bit of advocacy support from organisations like Disability South Australia and Brain Injury South Australia, are those kind of things helpful as well, you think?
Bree: Yeah, I do. The more people that can support someone, the better. I'm about the participant. So when I do my review meetings and everything, I'm very focused on the person, not so much on what everyone else has to say when it comes to the goals, but it's the background information that's really important. And it's the reports, we can't get through enough how important it is for you to get your reports from your service providers, because that's the evidence that we need to go forward with the next plans.
So when everyone's working together, good things really do occur, because we're able to get a real good idea of where they're functioning, where the improvements are. Even setting goals, like it's really great to have support for the person to be able to come up with the best goals and the best outcomes for the next plan.
Chris: [36:42] I guess I want to talk about that next stage, which is the planning process. So once someone is approved and presumably everything has gone well, the next they need to is create this plan for their supports and services. What does that process involve?
Bree: What would happen is, the Access Request Form will actually go in, the participant will get either a phone call, or a letter to say that their access has been accepted. Then moving forward they will be contacted by a local area coordinator, or someone from the NDIA. And if it's a local area coordinator like myself, what happens is we arrange a time that suits the participant to come into our office. We are able to do home visits if someone isn't able to attend the office, we're very flexible like that.
We also travel, so we're located in Mount Gambier and we do the Limestone Coast, the region where we cover is huge, like we head up to Bordertown. So, we will actually go out to different regional areas to make it easier for people to be able to have face-to-face appointments, because that's our goal.
And then moving forward from there, we'll actually sit down with the person. We go through all the questionnaires and then we get a bit of the idea of the person with what supports they have. We've got questionnaires regarding participants, we call them Participant Statements, and it's around where does the person live, what type of supports the person has.
Then the next question's around, what their interests are, what sort of services they're looking at engaging in if they've got interests, like crocheting, and then that gives me an opportunity to then do research as to what community programs are out there that are going to match the person.
And then we actually set the goals and the goals are very... We do SMART goals, which means that they are outcome-based. So, we need to know in 12 months time, where were we from there to here? How have you actually achieved your goal? So, a goal for Pip could have been, one of hers is being able to walk at a faster pace. Already she's able to, through her goals, say that she's actually achieved that because she used to take an hour to walk down the hall, now she's only taking minutes. So, that would have been a very good SMART goal because there was an outcome that you could actually see at the end of that goal.
Chris: [39:07] What final advice would you have for people who wanted to get the most out of their NDIS plan?
Bree: Have a real good idea of what you're wanting from your funding, is the first thing. The second thing is linking with the local area coordinator, or if you've got a support coordinator, link in with your support coordinator because there's a lot of people that get funded and they're not actually using their funds because they're not sure what they're to do. And this is what we're here for. So, if we ring you, ring us back because we do monitoring. So throughout our plan, we don't just leave the person to flounder, we're in contact and we make an arrangement with the person to keep in contact, whether it's monthly, every three months or six months. And we keep on track to make sure that everything's okay. And make sure you feel comfortable to ring and ask questions because no question is a silly question, because we're here to support people to get the best they can out of their plans.
Chris: [39:56] Bree, it's great to know that there are people like you on the other end of the line there as well.
Bree: Yep. Real passionate in this role.
Chris: Excellent. Well thank you very much for taking the time to talk to us today.
Bree: You're welcome.
Chris: That was local area coordinator Bree Lowther.
Announcer: [40:09] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation. We draw our inspiration from the determination and persistence of stroke survivors, and that's why we work every day to prevent, treat and beat stroke.
There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride 4 Stroke, running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the FAST message with the people around you. So all Australians will know how to recognise a stroke and act FAST. Join the Fight Stroke team. Find out more at strokefoundation.org.au.
Chris: [41:08] Our final guest today is Siobhan McGinniss. Siobhan is a social worker who can be heard on the Stroke Foundation's StrokeLine. Siobhan, thanks for coming in.
Siobhan: Thanks for having me, Chris.
Chris: [41:17] I imagine that on StrokeLine, you've heard a lot of different stories about stroke survivors dealing with the NDIS.
Siobhan: We do indeed. We get a variety of questions on particularly that, around the access for the NDIS. I can go through a few. So, probably the first is the time consuming nature of the access process. So, we have had quite a number of callers who are finding that the access process can take some time. This can be due to a variety of reasons, so the access request being declined, the NDIA asking for additional information from medical or allied health professionals.
And also too sometimes for people who have finished their rehab and haven't had services involved for a while, it might be finding their previous health professionals and getting them to write the medical and allied health reports. With stroke survivors, we also have had a number of calls in regards to having the access process or having their access application declined. This can be especially challenging for stroke survivors in regards to starting the access process too early.
So we'd always recommend that you talk to your doctor about when your health condition might be considered stable, particularly for those who've had a stroke. So for example, we had a caller a little bit of time ago now who is a stroke survivor who was in a hospital, a family member had actually spoken to them and their next of kin in regards to the NDIS, about how it could possibly be beneficial for them, but the doctor wasn't able to confirm a permanent disability at the time. So their application was declined. And this can be something that comes up quite regularly with the callers that we get.
The access process itself can be daunting to some people. So we've had a number of calls from people who are struggling to understand the access process and how to get started. And I think Bree touched on that as well a little bit earlier, so we'd always recommend calling the NDIA and checking your eligibility. So, eligibility in regards to as Bree discussed, age, your geographical area, your age, sorry, whether your disability is permanent and the impact that your disability has on your daily activities as well.
Chris: [43:22] It sounds like one of the problems may be the fact that you're dealing with a government system here, which has bureaucratic language, and we've heard some of that today. How important is it do you think for people to be able to speak that NDIS language and how do they learn it?
Siobhan: Look, I think it's really important, Chris, because there is a whole world of NDIS "jargon" out there, so it is a good idea to start getting your head around some of the terms that are used. This can help you better understand the information provided by the NDIS, and knowing what the terms mean can also help with streamlining this process.
So, the things that we'd suggest that people think about are things like "reasonable and necessary". So understanding the idea of reasonable and necessary supports, important to know what that means so you can be sure to ask for supports that are likely to be funded. The NDIS will provide supports that are directly related to your disability and not those related to day-to-day living costs that have no relation to your disability, as Bree talked about a little bit earlier.
The NDIS aren't able to provide funding for supports that can be accessed, as we talked about earlier, from places like Medicare or other government funding services. It's also a good idea to have an understanding about the differences between "core", "capital" and "capacity" funding, as these describe the different types of supports available to help you achieve your goals.
So if we think about core funding, these are activities that are to help you in your everyday life. Things like helping you to cook a meal, helping you to have a meal delivered, help to go to a social activity, such as your local gym or sporting club. So like Pip was talking about, assistance with her shopping, her gardening and getting to and fro from appointments.
Capital funding is, as Bree described, funding for equipment, home or vehicle modifications or specialist accommodations, so vehicle modifications to enable you to drive. And also as we talked about, the home modifications. So, capacity is the last, so that's providing support or funding that helps you learn new skills.
So it can include help with your NDIS plan through a support coordinator, as Bree was talking about and as people were talking about, helping find or keep a job. So it might be looking at things like also improved living arrangements. Also looking at things like improving relationships, so maybe accessing behaviour intervention programs or social skill development programs to help people live as independent a life as possible. Improve learning through either looking at school or further education, or linking them into other supports.
Chris: [45:57] It all does sound quite daunting, but I'm sure you've also heard some success stories about when the NDIS does work for people.
Siobhan: Oh look, absolutely. We've had some good success stories. If people want to have a look on our EnableMe website, there is a great blog by Desney King who talks about how she accessed the NDIS and that the process was quite a smooth and reasonably quick one for her. I think Pip's story is a very positive one as well.
I've recently had a call from a young stroke survivor who is feeling quite isolated following their stroke. They'd had no supports in place apart from the outpatient rehab that they were attending, so they did have some ongoing difficulties with their communication and getting out into the community whilst the people they were living with, their parents, were working. So, through the NDIS plan, they were able to get out to a local communication group with the help of a paid carer, and then they were able to start participating in a local gardening program, which helped them gain new skills, meet new people, extend their social interaction as well.
Chris: [47:00] So, I guess to sum up, what are your top tips for people applying for access to the NDIS and setting up a plan?
Siobhan: I think the first one would be research and know how the NDIS works. So, start thinking about it as early as possible, so to maximise your participation in the scheme. You need to know what's included, what's not included. We'd always suggest going and visiting the NDIS website, maybe looking at webinars that are available, ringing the StrokeLine service, contacting your local area coordinator.
There's lots of really great resources and information out there that you can actually print out, which can help you know what can be provided through the NDIS, how to develop goals, those sorts of things. Also to involve your family, involve your friends, involve your rehab team in regards to that as well. I think both as Pip and Bree had mentioned, have a clear vision and think about your goals, and not just your immediate goals, but your longer term goals.
So think about what's important to you. Think about how you want to live your life and what do you want to achieve, and consider all aspects of your life. We'd often suggest putting together, say a list of goals looking at both the small and the big, and writing those things down. So perhaps, doing a list of what you do every day where you need help, what you think would make it easier for you to achieve those goals, and be as specific as you can about what you need and what you want, what your goals are and how you want to live. The NDIS have some good resources in regards to thinking about and planning your goals.
There's also other services out there, such as Yooralla and VALID, which have some really good resources as well. Sometimes it can be helpful to take notes on the challenges and issues you run into that make life harder than it should be, so this can often help spark ideas about the kinds of support you want from your NDIS plan. Again, writing things down and planning for the future. We would also say that thinking about the language and being aware of the Access Request and the language is probably really important. They're probably the top tips.
So probably in summary, research and look at as much information as possible, keep it all together and use it as a guide for your journey. Talk to those around you, your friends, your family, medical team, your doctor, involve them in the process. Ask questions. So I think Bree mentioned, no question is a silly question, so don't be afraid to ask questions. And probably the most important, check out a plan before it's submitted. So, if there was anything that you feel that is not included or there's any information that you think would be helpful in developing that plan and that goals, making sure that that's in the plan before it's submitted. Otherwise, potentially you will have to look at an appeals process to have that plan changed.
Chris: [49:54] Thank you very much Siobhan. Now remember if you want to speak to a health professional like Siobhan and get some advice about the NDIS, you can call StrokeLine on 1800 787 653, that's 1800 STROKE. Or you can go onto EnableMe, you can ask a question and get a response from health professionals and other stroke survivors.
Now that is it for part one of our NDIS podcast. Now make sure you listen to part two, where we look further at getting services under your plan, what happens with the 12 month reviews and what happens when things don't go according to plan.
If you like what you've heard today, please give us a good rating and review on wherever you found this podcast, as that helps lift us up in the search rankings so other people can find us. Now, thanks again to our guests Pip Murray, Bree Lowther and Siobhan McGinniss.
Announcer: [50:41] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.
EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.
The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.
Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.
The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.
You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.
Chris: [00:33] Welcome to part two of our podcast on getting the most out of the National Disability Insurance Scheme or NDIS. If you haven't listened to part one, I recommend checking it out as it covers the basics, including how to get access to the NDIS and how to set up a plan to achieve your goals.
In this second part, we ask what you can do when things don't work out right and how you can appeal, and then what happens after you're on the NDIS, including managing a plan and service provider, and going through an annual review. In a few moments, we'll speak to NDIS local area coordinator Gabriela Obbiettivo, and to Carol Pham from StrokeLine.
But first, we have with us in the studio young stroke survivor and author Emma Gee. Emma is an occupational therapist, who since her stroke has become an inspirational speaker presenting on person-centred cared and resilience. She's also written a book about her stroke journey called Reinventing Emma.
Emma, thanks for coming in.
Emma: Thank you.
Chris: [01:33] Now, you have been a guest on this podcast before, and I'm sure a lot of people would know about you anyway, but for those who don't, could you quickly tell us your stroke story?
Emma: Yes, so I was working full-time as an occupational therapist with stroke survivors early in their own rehab, and to cut a long story short, I was diagnosed with a malformation in my brain stem called an arteriovenous malformation, which during removal bled and I had a stroke due to the haemorrhage and went into a coma. So that was the beginning of my journey, which was when I was 24, so 13 years go. And being a recipient of the care I'd once provided as a therapist, I went through my own rehab.
Chris: [02:27] Well, we'll really get into your story about what you went through getting on the NDIS, but, first of all, I mean it was a big change obviously, the NDIS, in Australian policy. What were your expectations for it, coming into it?
Emma: I think as a stroke survivor that knew the importance of having a good, strong support network, and in a way getting used to having that support to enable me to do a lot more, I was really excited at the prospect that I could continue that journey and have support to do so, and it meant that I would probably, I thought, I would have a lot more normality with the other supports that were providing assistance pre-NDIS.
And so to be honest, I thought this is so important to enable people, particularly those that don't have support to be able to sustain the longevity of their conditions, and yes, I was really optimistic about it and had no hesitation that I would be an eligible participant and it would just roll over from what I was currently doing.
Chris: [03:50] So then what happened when you did apply, though?
Emma: So, as people can't see me, I have quite a lot of physical deficits from my stroke, and I do require quite a lot of support. I live independently, but in order to do that and return to work and do everything I do, I need a lot of support. And so I thought that transition to NDIS would be easy, and when I applied, when I got their letter of rejection saying that my assessment did not meet the criteria, I was not eligible as a participant, I was extremely crushed. Not only personally, 'cause I knew I needed that support, but also professionally as I do do a lot of advocate work.
So a lot of people were saying to me, "Hey Em, if you're not eligible, how can we even ... what's the point of us going through it? You present with a physical ... It's obvious that you need help." And particularly for those that either don't have support or don't have the physical impairments that are quite evident when you see me, they thought there's no way that the invisible signs that we have since our stroke or whatever injury we've acquired is, we're going to be eligible.
Chris: [05:35] So presumably you appealed that decision, did you?
Emma: Yes, unfortunately when I got that letter of rejection, I was quite unwell and so three months afterwards, I went to appeal it, but unfortunately that period of appeal is three months, so it had expired. And I was already unwell so I was probably more vulnerable and reliant on support to advocate for me, to advocate. And so when I was able, I got two other occupational therapists who I know quite well, they helped me go through all the criteria and reapply and go from scratch.
Chris: [06:34] Yeah. Did you have an advocate support as well, with that?
Emma: So I also had my NDIS planner help me go through that process, who thankfully in my niche as an occupational therapist, one of my friends works quite high up in that NDIS space so it was an amazing opportunity that I had that support with me.
Chris: [07:05] So what was it, what it did actually take then for you to get through and get on the NDIS? What was the magic words, or what did it require?
Emma: So it was a very, very, very, very long process and it meant quite a few discussions. First of all, I had to educate all my providers and my other advocates did too about how to pose letters, evidence to suggest that... 'Cause a lot of my providers wrote, "Despite all these deficits, Em still lives independently, Em can still do all those things," and they knew that was my mentality was about ability, not disability. And basically to be eligible, they had to just focus on the deficits and the impairments.
And so it was about ways of educating them on how this had to happen, and in a way to withstand that language and that it was very demeaning how it was posed, and it was all about what I couldn't do. That's where having support was easier to withstand that, because I could just let them say, "Hey Em, that's too... you're being too positive, just focus on a scale of like 1 to 10, on a bad day, what you can't do." So for me, I had changed over 13 years of what I could do, not what I couldn't.
Chris: [08:49] And has that affected your outlook ongoing, or is it sort of a thing that you just have to get through?
Emma: It definitely did last year when I appealed, and particularly after all these providers, and amazing providers I have, saying all the, listing everything I couldn't do, I still received a phone call saying that I still didn't meet the criteria. So thankfully, my ophthalmologist again wrote, "Em's legally blind," and that got me over the line.
Emma: But I think for me, last year I had to focus on the negative side and subsequently, that really was such a gruelling, disempowering process. And at the time it was awful, but with hindsight it's enabled me to really reflect and think if I didn't have support, or if I hadn't had support to appeal, then perhaps I wouldn't have the services in place that I do now, which in a way makes it worthwhile, but it wasn't fun.
Chris: [10:13] Yes, I guess that is it, it is focusing on getting you those services that you need. What services do you have under your plan?
Emma: So I've got quite a good plan. So at the moment, I get my unit cleaned every week. So I've got a cleaner. I've got maintenance assistance, so anything from changing a light globe to picking up my dog's dog poo, something my dad would have to always do, but now I can enjoy time with him and he doesn't need to do that and it's not such a burden on him. I get a carer about three hours a week, doing things like collecting mail, getting me lunch, chopping up food if I need help, putting out my bins, things that my mum would do and now, that's not necessary that she does that.
So I also have been entitled to upgrade my shower seat, and I also was eligible for a new electric scooter, which is I don't drive so it enables me to go out and get places. I still self-manage my... I don't take medication. I just do yoga and swimming, but basically it means that I can, within my plan and it's individual to everyone and Gabriela will probably speak to that more about that, I have transport covered. So to get to yoga or swimming, whilst it's not eligible to pay for the actual membership of it, it enables me to... It's one less thing to think about sitting on trams for 40 minutes and back.
Another thing I do is I've gone back to rehabilitation twice a week at Epworth Hospital to try, and you'll probably laugh here because I'm in a walking frame, but I'm trying to run again.
Chris: Ah, excellent.
Emma: I'm training twice a week for that and that's a very emotionally taxing thing and definitely, it would not be possible if I... I wouldn't choose to do it if I didn't have that financial support covered through the NDIS. And I'm about to go overseas on a holiday to Europe, and my equipment over in Europe, my electric scooter and wheelchairs, which are in place to enable me to go to places I couldn't access normally. That is reimbursed through the NDIS. So that's an expense I definitely wouldn't take out of my pocket that I need. And in the past for 13 years self-funded all that so yeah, it's worth appealing it. I can see why people wouldn't appeal.
Chris: [13:57] So some of those things, obviously a lot of them are regular services you get, but then the other stuff is like the electric scooter, which is like a big piece of equipment. Has that all come through? Has that all been sorted out?
Emma: Well, it's been a ... I was saying to Carol previously, I ... got my electric scooter last week, which took seven months to get. So for me, I have heard issues with that, and for me, I could wait because having a scooter is... I had my old rusty scooter, I could manage, but I know a lot of people who couldn't wait for their electric wheelchair, and whether they've got some reason they can't wait. They have to self-fund it. And so that for me, I just think oh, it's frustrating I have to keep following up on this, and I have the ability to do that. It's a very frustrating thing to do, but it did require a lot of follow-up from me and my advocates.
Chris: [15:19] One other thing that really interested me was when you were talking about the services you're getting and how, like you said before, you had these informal supports, you had your family doing a lot of things for you. How has changing to now these funded supports changed your relationships with your family?
Emma: Yeah, I think that has been a massive change for me and one that I didn't ever think would happen. I think a lot of it was about education, because our roles completely changed. And so what my parents, for example, did for me and a lot of my other informal supports had done for me, suddenly they didn't need to do those things. So for them, they felt quite lost that they weren't helping me. But I think initially it was quite confronting, and it was hard for them and me in that I felt suddenly, I didn't need them anymore and I wasn't seeing them as regularly and it was quite... I needed their emotional support more.
And in a way, them coming around doing things like my bins and checking my mail meant that I would see them more, and suddenly that wasn't happening. But over time, we've worked out ways that it's whenever I need that support still, and I think it's both sides adjusting, but it definitely has amazingly freed up the... I don't feel a burden on them as much. And particularly as my parents are ageing, for example, there's so much that I can do that they did. And I was reluctant to give them all those things to do when I knew that it probably was asking a bit much, but I'm reassured that now, they will get done and that I'm not posing a burden on them.
So I think it's very reassuring for them I'm sure, to know that when they go, hopefully, touch wood, that's not for a long time, but that I'll still be supported. So I think it's very reassuring for them too, and they don't have that guilt that I'm sure many carers, I imagine, would have.
Chris: [18:03] Yeah. Well, that sounds like, yeah, a good outcome to get from all this.
Emma: Yeah, I think I didn't ever think that I would reflect on this as a positive experience, but I think if anyone, and from my understanding it's quite inconsistent in going through the process of becoming a participant of the NDIS, but some people get it really quickly and others like myself just have a strong wait and lots of appeals, and I think if anyone, it probably was a good thing it happened to me. Because hopefully now I can draw on that and make it easier for other people.
Chris: [18:54] Well given that, what advice would you give to people to try and get the most out of the NDIS?
Emma: Yeah, if I think about the process I went through from the beginning, really go into the evidence you collate and that I think you need collate a lot of evidence from the beginning before the appeal, about how to word things and what you can... 'Cause it is assessed initially on paper. And so I think it's worth investing time in putting forward the application, but I think also, too, it's really important you have support from your providers and informal supports as a way to communicate or relay that in a better way.
And unfortunately, in a way that does focus on more of your disability, not your ability, but have people around you to really highlight that there is still a good side to it. I think you need that emotionally to withstand it, that it's really just a process you have to, unfortunately, going to work with focusing on what you can't do, not what you can and that's quite confronting. But I think if with hindsight I had known that going into it, it would've been a lot easier to go, "Okay, they want to know just the bad things about this."
And then I think also having that support to elicit the positive sides, particularly after those interviews and applications, to really put things in perspective for you and support you, particularly when you're over it and frustrated and don't want a follow up phone call or see how it's going, to have others around you to do that for you. Not to say that you can't do it and you can't self-manage, but I think in some ways, I know for myself, even though I'm able to do it, having another to advocate for me has made it a lot easier.
Chris: [21:32] Well thank you very much for coming and giving your perspective, Emma. And if you're listening and like to hear more from Emma, like I said she has a book called Reinventing Emma, which you can find out more at her website, which is emma-gee.com, and Gee is G-E-E.
Chris: That's it. All right. Thanks again for coming in, Emma.
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Chris: [22:21] Our next guest is Gabriela Obbiettivo, who works for Baptcare as an NDIS local area coordinator, which as we learnt in part one of this podcast is a person who can help you with your application to get access to the NDIS. Gabriela, thanks for joining us.
Gabriela: Thank you. Thanks for having me.
Chris: [22:38] Now, we've just heard Emma's story, and the kind of things that she went through to get onto the NDIS. Have you heard stories like this before?
Gabriela: Yes, yes, I have. It's actually quite common. We get a lot feedback to say that the access request process can be quite deficit-focused, which is really unfortunate, but I suppose there is reasoning for that. When we look at the NDIS legislation, to get access onto the scheme we need to show evidence that someone's got a permanent and significant disability. And particularly for a disability like stroke, where the disability could be so varied from individual to individual, providing evidence and proving that someone's disability is significant, we need to go into the details about what that looks like for that person day-to-day.
And we're getting a lot of what we call knock-backs for access requests where there's just simply not enough information for the NDIS to make a decision around access. So much so that we've actually got a bit of a project going on around it, which I'll talk a bit later about, but we're just trying to improve the capacity of the community, particularly health, GPs and allied health, understanding how to submit those access request forms. We're seeing a lot of GPs, when they're completing the access request forms, not going into detail about what the functional impact is for that individual.
So for example, I supported someone recently with completing their access request form where the first application the GP had just stated, "Needs a support worker," in that application, and that doesn't tell us enough information about what supports that person needs from day to day. So we're just trying to help inform the GPs about what they can do as a part of the access. If GPs don't have the understanding of that individual's day-to-day to be able to go into detail, what we're recommending is including within that application other assessments that the individual might have, or that they can obtain, whether that be OT assessments, physio assessments, there might be hospital discharge paperwork, the social worker reports. We can even include support worker statements and self-statements, so that you can explain from your perspective, which is invaluable, what your day-to-day looks like. So there are a few things we can do as a part of that access request process that can get quite involved, but ultimately what we're trying to achieve is showing evidence that your disability is permanent and significant.
Chris: Yeah, I guess it's a big learning curve for everyone there.
Gabriela: Yes. Yeah, it is.
Chris: [25:35] Now, one of the other aspects of the process that Emma went through was the appeal of the initial decision. How does the appeals process work?
Gabriela: Yeah. So there's a few things. Well basically, you can review both an access request, and you can also submit a review if funding wasn't included in your plan that you are not satisfied with. So, I suppose when Emma was talking about that three-month period of submitting an appeal for that access decision, what Emma sounds like she ended up doing was submitting a whole new application and that's actually in a lot of instances what we're recommending, because the outcome for getting a decision when you're submitting a whole new application is a lot faster than submitting a review. So when you're submitting an application, an access decision has to be made within about 28 days, whereas if you're appealing a decision around access, there's no timeframes at the moment for that.
So what we'd also recommended you do is get in touch with either the NDIA or the partner in the community, your LAC, to find out what the reasoning was for you not getting access to the scheme. In most instances, it's probably that there's just not enough information and they can help inform what information might be needed to be provided. And that's what my team, for example, has been doing, is actually meeting with individuals around those access requests to help inform what they can do to provide that evidence, so that the NDIA have a clearer understanding of what your disability looks like for you.
Chris: [27:15] Okay. And just repeating some of the abbreviations there, so LAC, that's the local area coordinator, which is someone like yourself, and the NDIA is the organisation that operates the NDIS. Is that right?
Gabriela: Correct, that's right, that's right.
Chris: [27:29] Yeah. Okay, cool. Okay, so once you've gone through all this, and once you actually get in the system and you have a plan, and you know what services are funded, you then need to find people to provide those services. So how can people go about finding good service providers?
Gabriela: Yeah, so when you have a plan, your local area coordinator can help you get onto the portal, the NDIS portal, I'm sure some of you may have heard about. And we have on the NDIS portal what we call a provider finder. So if you're wanting to search for say an occupational therapist, you can type and it'll show you services in your area, registered providers in your area that provide that service. So that's one way you can go about finding providers.
You can also speak to your LAC. Part of what their role is, when it comes to helping you implement your plan, so to start understanding how to use it, they can help you get connected with providers that will help you achieve your goals. So your LAC has really good contacts to find service providers in the area. Some people might also have support coordination funded in their plan, which is another third party who will actually help you connect with those providers and help you build a plan of what that year will look like, and get you connected with those supports.
I'd also recommend just word of mouth as well. Speak to people that you know, family, providers that you're utilising might have some suggestions of different services that are coming out. Online research and expos as well. The whole disability service provider, the whole market is changing with the NDIA having come into place. It's becoming a competitive market. So there's all these new creative services that are coming into play. So I suggest going along to those expos as well if you can.
Chris: [29:19] Yeah, it sounds quite a daunting market, that. We spoke to another stroke survivor, Pip Murray in part one of the podcast, and she mentioned that sometimes the service providers can double their prices when they find out that you're on an NDIS plan. Is that a concern? And do you have any advice for getting around that?
Gabriela: Yeah, so the reason I suppose that that's happening at the moment is, when a registered provider registers to be a provider with the NDIA, they're guided by what we have as a price guide, so they can't charge over a price guided amount. What a lot of providers are doing is just charging that maximum amount.
Now, I suppose it's important to remember that with this becoming a competitive market, you do have the ability to try to negotiate that if possible. A lot of providers are not negotiating, but hopefully in time, providers will start to be in the competitive nature of what they're doing. You might start to see negotiations take place.
What I'd also stress is that your NDIS plan is a private document. Particularly if you're self-managing or plan-managing, there's actually no need for anyone to know that you have a plan. You can keep that information quite private and engage the service providers of your choosing. And for example, if you're self-managing, you can jump onto the portal, draw out the funds to pay for that service without that provider even knowing you have a plan. So I would sort of stress that. Even to a degree when you're agency-managing, the only information a provider needs is your NDIS reference number and the date frames of your plan, so they don't need to know what is in your plan. It is well within your rights to keep that information quite private.
The other thing I'd strongly recommend you do is make sure you're entering into service agreements. So, a service agreement is basically a contract which will outline the nature of your supports over a period of time, and you have the ability to negotiate that service provider. It protects both parties, so it protects you as a consumer and it also protects the provider so that they have a clear understanding of what supports they're providing. So please make sure you're entering into service agreements, that's really important. So that's probably what I would suggest you do in those situations.
Chris: [31:44] Great. Now we also heard from Emma about the delay that she had with getting her electric scooter. I assume that counts as capital funding, something like that?
Chris: Yeah. When there are those sort of hiccups and delays, is it also appropriate to lodge an appeal for that kind of thing, or are there other options of working through that process?
Gabriela: Well, it depends on the situation, and I don't know Emma's situation entirely, but you can't appeal a delay as such. So what I would strongly recommend in that situation is keeping that open line of communication with your local area coordinator about what's causing the delay. Is it that they don't have enough information to make a decision on that capital equipment, or is it that it's not being approved, and under what grounds it's not being approved? So what you really want to do is just arm yourself with as much information as possible relevant to you, 'cause keeping in mind everyone's situation is different.
Also familiarise yourself with reasonable and necessary decision-making, so any decision that an NDIA delegate will make is in line with the legislation, which is the reasonable and necessary decision-making. So, for example, it needs to reasonably meet the expectations of informal networks. It needs to be value for money. It needs to assist that person in achieving their goals. Facilitate social and economical participation. It needs to be effective and beneficial and be most appropriately funded through the NDIA. So if you can have an understanding of the decision-making process, that will sort of arm yourself with more information relevant to your situation, and might help inform what you might need to do next as well.
Chris: [33:31] Yes, as we've heard before, understanding the language and the process is one of the key things here. Now, another part of the process is the annual review. I understand that the plans only last for 12 months until they're reviewed, is that correct?
Gabriela: So typically, plans are for 12 months, but what we're going to see more and more of is, with adults particularly entering into their second or even third plan, and people are starting to get more confident in how to use their funding and what lies ahead for their year, so we will start to see more 24-month plans coming up. But for children though, for example, you'll likely mostly see 12-month plans and I suppose that's related as well to developmentally what happens for a child in 12 months is a lot more significant than for an adult. So there's a few things there, but for adults, you will start to see some longer plans coming into play.
And really with that review process, it's just an exploration of what's gone on for you. A lot can change in a year, so we'll have a look at what you've spent your funding on. If you had trouble using your funding, why? Have you achieved some of your goals? Have your goals changed? Is your circumstance changed? It's just a general review of your situation so that the next plan can be catered to your circumstance at that time.
Chris: [34:53] And if you have, say some unused funds from that first year of your plan, do they roll over to the next year or is it just start from scratch?
Gabriela: No. So the whole point of that review process is to create a plan that's relevant to your circumstance at that time and will serve you for the period of time that the plan is in place for, so as we said typically 12 months. So no, funding amount won't roll over. The plan amount is designed to service your needs for the course of that plan period.
Chris: [35:21] Okay. So obviously, these individual plans that we're talking about, this is one of the big focuses of the NDIS, but it does more than just pay for these. I understand there are things like community projects, which you've mentioned briefly. As a local area coordinator, can you tell us about a couple of the projects that you've worked on?
Gabriela: Yeah, sure. So I suppose it's important to know that with access to the NDIS being for permanent significant disabilities, not everyone with a disability will get access to the NDIS. So the NDIA has a big focus on making sure that we're building our communities to support all people with disabilities, and so that's why our partners are taking on projects to help develop our communities to create more opportunities for people to get involved, and be included in communities.
So yes, one of the projects I spoke about earlier was helping build the capacity of the health system to understand the NDIS, that's been a big focus for us. But we've also got some really exciting projects that we've been working on. So here in South Australia, I'm really proud of my team, I have to say we have achieved a lot in the year that we've been working with the NDIA. We've recently supported an all-inclusive music festival. So there was a mum here in South Australia, Karren Kelly is her name, and she has a son with a disability and she wanted her son to be able to experience a music festival like any young person can, really. And so we supported with her with creating this music festival, and we're going to be supporting with the second one, which will hopefully be coming up in 2020.
Chris: [37:00] Thanks, Gabriela. It's really great to hear about all these different ways that you're supporting people and benefiting the community.
Gabriela: Yeah, thank you very much.
Chris: That was local area coordinator, Gabriela Obbiettivo.
Announcer: [37:11] In your stroke recovery, the answers you need are not always there when you need them. But you can always go online to the EnableMe website and ask the health professionals at StrokeLine. You might notice some changes and not be sure if you should get them checked out. You can ask on EnableMe. Perhaps you feel your progress has plateaued and you need some help setting new goals to keep going forward. You can ask on EnableMe.
We're not here to replace your doctor, but we will give you the latest evidence-based information to help you live well after stroke, and you can also hear from other people in Australia's stroke community who might have similar experiences. You can ask a question on the EnableMe website, that's enableme.org.au, by clicking on the Ask A Health Professional link on the home page. Or call StrokeLine on 1800 787 653.
Chris: [38:01] Our final guest today is Carol Pham. Carol is a physiotherapist, and she could be heard on the Stroke Foundation's StrokeLine. Carol, good to see you.
Carol: Thanks for having me.
Chris: [38:10] Now, presumably there are many calls to StrokeLine and conversations on EnableMe that involve the NDIS. What are some of the success stories that you've heard?
Carol: On StrokeLine, we do hear a lot of success stories. Some of the ones that I guess stick in my memory a little bit is, I had a recent girl call us wondering what the NDIS was all about and whether she would be eligible for the scheme. She was a young girl, had a stroke some years ago, and was working part time and didn't think that she would be eligible because she didn't have access to Centrelink and thought the scheme was means-tested.
So during our conversation, we explored what kinds of difficulties she was having at home and what kind of supports that she would need to help improve the quality of her life. And over time, what we learnt was that she was eligible for NDIS, was able to get on the scheme, and most importantly was able to access supports and services and therapy to help live a richer life. So difficulties with fatigue was a big factor for her and she was able to access supports at home and services at home so that she could do the things that were really important for her, which was coming home and spending more time with her family and her kids.
Chris: [39:23] But on the other hand, have you also got any examples of people who are having trouble with their NDIS plan?
Carol: Yes, of course, we get lots of calls on StrokeLine about difficulties with the NDIS.
Chris: I imagine you're more likely to hear people who have got problems rather than people calling up to tell you that things are going well, so...
Carol: Yes, yes, we're here to help solve these problems on StrokeLine. So the majority of our calls on StrokeLine are around accessing the NDIS, or getting onto the scheme and having difficulties either because they're not quite meeting the eligibility criteria, or don't have the right paperwork to support their application. So that was discussed quite heavily in our previous podcast. So there's lots of tips and tricks on how to overcome that.
A very small proportion of our phone calls also go towards selecting the right providers, so young stroke survivors giving us a call and wanting to know what we would recommend in terms of providing physiotherapy, or occupational therapy, or selecting a carer agency at home. So certainly, we do explore that with our young stroke survivors on the phone. It's about finding out what your needs are and what's important to you, and Gabriela had some really nice tips around speaking to your local area coordinators, your support services around you, and getting some good, I guess word of mouth recommendations is another idea as well. So certainly on StrokeLine, we're here to I guess listen to what difficulties you're having and hopefully help you overcome it.
Chris: [40:45] Now I'm sure it's very hard to give a typical timeframe for getting onto the NDIS, but while not everyone would have extensive delays like we've heard about, it's safe to say that it won't happen overnight. Is that correct?
Carol: Timeframes are really difficult, and I guess it is case by case. It depends on what the difficulty is where you're living and in particular what kind of outcome you're looking for. So if we're looking at, for example, home modifications, there is a bit of a process involved in that, in that you need to have your home reviewed, you need a plan drawn up, you need to submit that plan through a number of portals, and then await for a response from that. So it is quite tricky waiting out the process a little bit.
Everybody has different experiences. Some people, it might take a few months to be able to have a plan fully implemented. It might take a little bit longer. So, what I would always encourage is to keep talking about it. Keep talking to your local area coordinators and your support coordinators about difficulties you're having, and trying to find alternative solutions while you're waiting your time.
Chris: [41:48] And obviously, if something goes wrong and you have an appeal against something, one of the decisions, whether it's an access decision or of the plan, that's also going to make things go longer.
Carol: Yes, that can absolutely delay things. So if you've had a plan given to you and you're not quite happy with it and you'd like to have that plan reviewed, the appeals process can take a little bit more time, but certainly a process that's important for you to go through to help get you the best outcome possible.
Chris: Okay, so it's still worth it.
Chris: [42:19] Then I guess on the other hand you have Emma's situation, where she just couldn't seem to get through even though she would seem to be ideal for the NDIS. What advice would you give to people in her situation?
Carol: Having a rejection letter from the NDIS can be a little bit dis-encouraging I suppose. We do often speak to stroke survivors on StrokeLine, and our advice is to try and keep persevering as much as possible. The advice that Emma gave around surrounding yourself with a good supportive network is really helpful, so if you've got family and friends who can help emotionally support you through that process, it's very helpful.
From a professional perspective, getting as much support as possible through your allied health professionals and your GP is really important, or any specialists who might be involved in your care, so your neurologist or rehab consultant that may have been involved in your journey to help you along, would be really helpful. So keep the conversation going and keep persevering and don't stop. Find out why you're not getting onto the NDIS scheme and work from there.
So there are a few key areas where we do get a lot of inquiries on StrokeLine, one of it being that the disability's too invisible and not something that we can see. So it can be difficult to assess. So that's where the allied health support through an occupational therapist or a neuropsychologist can be really helpful, to really highlight any invisible difficulties that you may have, whether it be cognitive, visual, or functional.
Re-look at your paperwork and make sure that you're using the right language. We've heard a lot during this podcast about learning the language of NDIS, and it's a really key part I think. So taking the time to learn how you should word your letters and reports, to help support you as best as possible is really important.
Chris: [44:06] That all sounds very sensible. Okay then, to sum up, what are your top tips for managing your NDIS plan?
Carol: When it comes to the NDIS, there are a couple of components to think about. So managing your plan might be a financial component, so have a think about who you want to manage the money side of things for you. Is it something you can do yourself, or is it something that a family member can do for you? Or is it something that you'd like to be able to give to an external party or provider such as a plan manager?
Other than the financial side of things, you want to look at your service providers, so how do you want to manage that? Do you want some help to look for service providers and get a support coordinator involved? Or do you feel confident enough that you can do it yourself and search for your own physiotherapist, for example, or carer to come into the home to help with your cleaning? And if you're feeling confident to do that, then absolutely go down that pathway. Just be aware of some of the things that you need to be able to do, so if you're choosing to manage your own finances, you do need to be able to balance the books at the end of the day, and do you have the ability to do that and do you feel confident that you could do it correctly?
When it comes to service providers, like picking a therapist or a carer to come into your home, have a think about what your individual needs are and make sure you interview a few and make sure you're selecting the right one for you. So Gabie spoke a little bit earlier on about, perhaps getting word-of-mouth advice, or picking someone who's local to your area. It might be really important for you to have someone who has specific expertise in stroke recovery, so have a think about what's really important for you and match your service providers to your individual needs.
Chris: [45:41] Thanks a lot, Carol. Now remember if you want to speak to a health professional like Carol, you can call StrokeLine on 1800 787 653 or 1800 STROKE. Or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors.
Now that's it for part two of our NDIS podcast. Remember, if you haven't yet listened to part one, you can find it via the EnableMe website, or from wherever you found this one.
And if do you like what you've heard, please give us a good rating and review on iTunes or Apple Podcasts, or wherever you've downloaded this podcast, as that helps us lift us in the search rankings so that other people can find our podcast. Thanks once again to our guests, Emma Gee, Gabriela Obbiettivo and Carol Pham.
That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.
EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.
The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.