Pathway for People with Mental Illness

My name is Jenny and I work for an organisation called VMIAC – has anyone heard of VMIAC? No… just a couple? Yep? So basically it stands for the Victorian Mental Illness Awareness Council and what we do is we are an advocacy group for people with mental illness. We educate people around mental illness, will advocate, you know, with governments and things like that – basically, it’s an organisation for consumers with mental illness run by consumers with mental illness. It’s pretty much the only one that there is in Victoria I don’t know about Australia, but certainly within Victoria. So that’s what we do. I liken us to be like a union for for mental health or mental illness, and you’ve all got pamphlets that have been given that if you want to join us at the end It’s free to join up. We would love you to join up. You don’t have to have a mental condition to join up. It just means that you stand up and believe in what you’re saying, standing up and believing in what – what our principles are which are written down. And we would love you to do that because elections are coming up and we need people. We need a voice. Anyway, that’s enough of that because that’s not why I’m here. So I’m here to talk about the NDIS and mental health which is in putting the pieces together because it’s a very very different way for people with mental illness and then general disability. Just briefly, have you been to many of the other sessions that have been on today? So, I’m really sorry If I’m repeating, so you’ll know that what it stands for the National Disability Insurance Scheme, it’s not going to affect your pensions if anyone’s on a pension at all. It’s a new way of funding. That’s all been explained to you in sessions? Yep? Okay. Skip past that. Basically, the NDIS was never ever intended for people with mental health conditions and as a result, we’re finding it really hard to get people through to become participants of the NDIS so we need to – what I’m do is coming out and talking to people about how to actually navigate the system if you’ve got a mental health condition because it is pretty much a very different kettle of fish and it can be quite traumatising for people with mental health conditions and we don’t want people to get worse, basically, and that’s what we’re seeing a lot so by coming out and giving you information where we’re hoping to prevent that. So first of all, the first obstacle to do with it is language. I don’t, that’s fine. I don’t know very many people at all with a mental illness. who would classify themselves as having a disability you know, so that just shuts the door to so many people straight away just the fact that it’s a disability scheme So letting people know that you’ve got a mental health condition, that it’s considered a disability and you can apply for the NDIS that’s a big step. So you can apply for the NDIS if you have got a mental health condition. Forget the word disability because that’s just government lingo. Who’s worked – who has dealt with Centrelink before? Few people? So, you know the bureaucracy. You know how it works. You know that they’ve got there there are you know set of ‘tick and flick’ and words and acronyms and things like that, there’s a very similar thing. Don’t get bogged down by the wording. That’s really really important. I’ve been to doctors and spoken to doctors and they’ve said “well, what’s… what’s mental illness got to do with the NDIS?”, you know, “then it’s for disability?” So even doctors are really, really confused about it. But that’s the first really, really big barrier. So it’s about breaking down that and jumping over those hurdles. The second one is around permanency. Anyone that’s been involved in mental illness and in that whole thing has, has – it’s about the recovery and it’s about the strength of a person – what the person can do and what they’re able to do and all the reports or the psychiatrists, the doctors, the counsellors, everything – it’s about the recovery process, the recovery framework. The NDIS is not about that. The NDIS is about looking at your worst; looking at what you can’t do, and that’s really traumatising for a lot of people in itself. And once again that really confuses people and in particular doctors who are and/or medical practitioners, who are absolutely needed to get someone to be a participant of the NDIS. Because you know, they might put – well… they’re very reluctant to say that this is going to be a permanent thing for someone because they don’t want people to go backwards you know, but really they actually need to talk about it being a permanent condition. I… liken it wrongly or rightly to things like asthma, to diabetes, to epilepsy you know, if controlled, if you know – it doesn’t even have to be medication, but if dealt with, a person can live a very meaningful… normal life in that sense without it, you know being interfered. The same with mental illness in the sense that if recovery is still there, recovery is still an option that if it’s sort of managed and things like that, you know, you can live a meaningful life in that sense. But the underlying vulnerability of mental illness is there with you forever. And that’s what they will say, and I’ll talk a little bit more about that later when I talk about doctors. So there is an information gap for… for practitioners. Like I was saying before, the… you know, doctors that I’ve spoken to saying “well… it’s not it’s not for mental illness”, you know? Just just the fact that that’s what they’re saying, or some are saying you know, it’s really sad and then now they’re saying “well, you know there’s all this stuff that we’re meant to do”, and there is a lot of stuff that they’ve got to do “and no one’s teaching us. No one knows what’s going on”, and what’s also happening is that things are getting knocked back. There’s a lot of – a lot of applications getting knocked back. It’s very, very hard to get on to the NDIS if you have got a mental illness. For early intervention, for instance, I’m not talking about early intervention like young, you know, young early intervention, early childhood, I’m talking about for teenagers, say for instance, who are – who may not have been given a diagnosis as per se as yet but there’s certainly something there, but there’s certainly a lot of psychosocial disability – early intervention would be the absolute best stream to go down because you think about it: that’s the when there’s chance of friction with the families, family breakdowns, in homelessness, dropping out of school, unemployment, there’s a whole stream of psychosocial disability linked with mental illness, that if there was the supports there through the NDIS, you know, they could navigate. Navigate that pathway. Not one single person with a mental health condition has got through on early intervention. Not one. And now that’s something that’s been raised, and we said that they’re going to look at and that’s fantastic. What I’m presenting today is – I don’t like calling it the worst case scenario in a sense but what I’m wanting you to do – because if you’ve been to some of the sessions before, you would have heard that there’s inconsistencies. You know – regardless with inconsistencies with NDIA, inconsistencies with your LAC. We don’t know who your LAC’s gonna be so you might end up with fantastic ones and let’s keep our fingers crossed with that but I’m talking generally how it the worst, the worst case scenario – I don’t like to hear – I said in office with people who do Appeals reviews for the NDIS and I kept my ear open all the time to find out what’s going on, to find out why things are getting knocks back, what sort of things are getting knocked back so that I can bring this information to you so that you can actually navigate and be aware for what’s going on. Okay. So, there’s a huge information gap for practitioners. Deadlines is another really big issue – problem, in that once a person applies for the NDIS you get, you know, where you’re going to get sent your access request form. You get 28 days to return that. Now, for someone with a mental illness that’s just applying a lot of pressure. I mean, you’d be lucky to get a psychiatrist appointment within 28 days to start off with, you know. And that’s not taking into account that you might have, you know, one week where where you’re traveling “okay”, but then the rest of the time you just can’t even get out of bed. The rest of the time, you know, you’re just really really struggling to keep a thought in your head. The rest of the time you’re actually struggling to stay alive So, it’s not taking that into consideration. So, my suggestion to you is before you actually ring up and apply for your – apply for the NDIS, before you ring up and you know – to get that application form, that you gather as much evidence as you can. Start gathering your evidence now, so that that pressure isn’t put on you because you don’t need any more pressure So, deadlines are an issue. You can also, though, ring up and ask for an extension but my suggestion is get your evidence at first as much as possible before you ring up. Okay, and then there’s a lack of mental health understanding… and that’s both with the NDIA and with with LAC. As with anywhere, you know, you will have people who actually fantastic and understand mental health issues, whether it be the NDIA or LAC but there are those that don’t and some of these examples just very recently are coming from a LAC – speaking directly to a LAC to an NDIA a worker you know, saying in regards to someone who has got a major depressive illness and you all know if you’ve got a major depressive illness that how much… well, it’s really hard to even get out of bed, it is hard to be motivated to do anything. It’s not just that you can’t and it’s not the simple motivation, “oh I must go the gym”, or something like that; it’s just really hard. Comments back like “well, everyone struggles to get out of bed every day” coming from NDIA! This is this is stuff that is, you know, we’re hearing. The comments like “if someone can’t go to a shop during the day because of panic attacks, anxiety, whatever”, then you know, the LAC or the NDIA may say “yeah, but well, you know if you go at night time when there’s not as very many – not those many people around then it won’t be as much an issue”. Total misunderstanding about what mental health issues is about. Better move on because I’m talking too much. So basically, the process can be, at times, overwhelming, as you can imagine. Be kind to yourself, take time preparing before you apply, and make sure that you have support. It is vital that you – that you have that support because it’s gonna be a traumatising experience, even knowing that this – the things that you need to do, the evidence you need to gather will be a bit trau – you know, a bit traumatising, will minimise it a bit. It is going to be a traumatising thing because it’s focusing on that. So, if you’ve been to other talks then you’ll know the eligibility criteria. Everyone… know the eligibility criteria? Yep. Okay, so to receive funding from the NDIS, the consumers disability must be both permanent and significant. So a permanent disability means that it’s likely to be with them for life. That’s the one that the doctors that’s really, really, really struggle with because they don’t want to say that something is permanent. There’s a – a question on the on the what was gonna say, like, on the access request form that says, you know, “is there a remedy for this?” and doctors will write “mmm, yeah, you know, you could you – could actually, you know, perhaps do some yoga or meditation or try this or try that”, that’s their interpretation of remedy, you know, like, for sort of what’s going on, and they’re getting knocked back. What that question is actually asking when, on the access request form, remedy is equal to cure. So what that question is asking, “is there a cure for this?”, and if the doctor says yes then say “Fantastic! You give me the pill, I’ll take it right now, and then I’m cured.” No doctor is going to say that. No doctor can say that, and there needs to be a significant disability that affects your ability to take part in everyday activities. So the evidence of the disability needs to be confirmed by a psychiatrist GP or occupational therapist, they say it needs to be a recent sort of report; this is the latest stuff that’s come out, the relationship with your GP/doctor; you need to have been in a relationship with them for at least six months, you know, so it’s not just someone that you go unless it’s additional type stuff, and the most important – well, it’s not the most important thing but it’s – it is, is that it must detail the impact that a mental health condition has on the person’s ability to live an ordinary life. So that’s the – that’s the stages. If you’ve sat in things before you’ll know the stages. You know, you meet the eligibility criteria, gather your evidence, apply for the ARF, You’ll be contacted earlier – Someone said that they only do face to face assessment now. I’ve left phone assessments up there just in case because you always need to ask for a face-to-face. It’s so important that you ask for a face-to-face because people have in the past had the phone assessments and not even realised it’s been an assessment. Yep. And also, other things that have come out, like, just say I ring your house and go “ring ring ring ring”, and I say “hello! How are you?”, What’s your response? -[CROWD] Good! -[JENNY] Absolutely! That’s a polite way to respond. You’re not going to go into things. That is also being used as evidence that “person’s good, so it’s not with them for life”. Now these are things that have come up with the tribunal and stuff so it’s – it’s pretty ridiculous. So, you actually need to make a record of every single time that you’re contacted by the NDIA. Every single time you’re contacted by a LAC Take a note of – note of all that and note what the conversations are and be aware that anything can actually be an informal assessment. It shouldn’t be like that and hopefully everyone’s working towards the point where it won’t be like that, but just because it’s happened before for some people I’m letting you know because I don’t want you to be like “what the crap?”. Okay. Then you receive your plan and you put your plan into action and there’s a lot of stuff in that too. But anyway. So, that’s that whole thing that I was talking about, you know, “Is there a remedy?” Really, it’s asking “is there a cure?”, this is stuff that doctors need to know. On our website, we’ve written stuff that you can actually print off take, with you to your doctor so that the doctor’s targeted, rather than sending stuff out to doctors that may not read it so that they can understand it. So we’ve looked at the NDIS and disability. Now we’re going to quickly look at psychosocial assessment. So we’ve got Ben here and we’ve got Jerry and yes, I love ice cream So Ben’s 28 years old he’s single and he’s been diagnosed with post-traumatic stress, chronic anxiety, and depression, and so is Jerry. They’re the same. Both Ben and Jerry should be able to get the same things from the NDIS because they’re the same medical diagnosis. Would you agree with that?
No You’d be wrong if you thought that because it all depends upon the psychosocial assessment, yeah? So when we’re talking about psychosocial disability or psychosocial assessment, basically, we’re looking at a combination of the psychological and social behaviour. So if you’ve got your little balance beam here and one’s out of kilter, it will make the other part go out of kilter as well. So you’ve got your – your mental health condition, and then from your mental health condition, which is what, you know, psychiatrists and all that sort of stuff deal with, then you’ve actually got your psychosocial disability; the way that it affects your life. Okay. So let’s look at Ben – the day in the life of Ben he struggles to get out of bed. He’ll often go back to bed during the day. He doesn’t bother with a shower, you know, or even cleaning his teeth because what’s the point? He doesn’t see anyone or do anything. He can’t hold down a job because he’s so tired all the time and he’s really scared of failing. He’s lost contact with most of his friends because there’s not much to say, nothing’s changed, takes too much effort to pretend everything’s okay. He doesn’t eat very well because, you know, why bother? He doesn’t leave his house much. Besides, you can’t really afford to do anything anyway He dreads opening his mail so he doesn’t. He doesn’t even answer his phone. That’s the other thing. You’ve got to answer your phones if you apply. All those that don’t answer their phones, it’s going to come up as a probe but you’ll actually need to answer your phones! He can feel another migraine coming on so Benny goes back to bed again. Jerry also struggles to get out of bed. Then he remembers he’s got a short course to do. He gets up, showers, and has breakfast. He attends his class. He has coffee with his classmates. He picks up some groceries for tea. He goes for a short walk. He reflects on his day and is actually surprised to realise that he’s enjoyed something – he’s enjoyed it. He goes to bed feeling a bit more satisfied with himself. So, who would benefit most from the NDIS? Ben or Jerry? -[CROWD] Jerry My aim for this was to say Ben, But no! You’re right because Jerry might be having a freaking awesome day and the rest of the time he’s just like, in a mess and can’t even go anywhere. Do you know I mean? That’s the whole episodic nature sort of thing. So, you know, that’s – that’s about judgment, but we’re not getting that deep. That’s just to show that there are some people who have actually got mental illnesses that actually won’t need the NDIS. You know, and it’ll probably be more damaging for them to try and even get it, in a sense. So there are some people that won’t need it. It all depends on your psychosocial disability Yep, and not – and because your dreams and your goals are going to be different, it’s not you know, what one person is going to get isn’t going to be the same for what you get. And so that’s just to highlight how you can have a diagnosis but – but some people need more supports than others in a sense. Okay, so that’s just, basically, you know, what are the NDIS is looking for is the areas of functioning and areas that you really, really struggle to function in, and so things like, you know, can you articulate how you feel? How are you around showering, dressing, safety, cooking, cleaning, shopping, managing money, paying bills, diet, all that sort of stuff? So, that could be the possible outcomes of it. This looks really really complicated because it is. And it looks really, really daunting and you want to – you wanna run away from it, but basically all these things, on this side, can be symptoms, you know, obviously not all of them all at once, but can be symptoms of a mental illness or a mental health condition, and different people who experience different things. And then on this side, this is ways that they can affect you. It’s not an exhaustive list, you know, obviously there’s more and more that can be added on to it and how it affects you. Why I’m putting this up there is that you need to actually be honest with yourselves for the NDIS about… what are the symptoms? You know, what are the things that you experience? For – because of your mental illness or mental health condition, and then how does it affect you? Because as I said before, masters at covering up. Masters of… not just covering up but looking for the positives in a sense, and certainly that’s the way that all treatment has been for people with mental health issues. It’s all been about recovery, focus, the strengths, and what you can do, and all that sort of stuff. This is asking you to look at these things. Yep? So these areas here, one, two, three – there’s six areas: social interaction, self-management, self-care, learning, mobility, and communication; these are the areas that the NDIA are going to look at. Right? Specifically. Now you need to think outside the square because it’s not for physical disability. It’s for a mental health disability in that sense, and it’s going to be different. So things like mobility, it’s not about you know, chairs or changes to cars and stuff like that. It’s about getting out of the house, literally. It’s about, you know, yes! You can get out of the house, you can walk out of the house, but it’s about, actually, can you leave the house? And you know what I’m talking about. It’s about, can you get on a train? You know, without thinking that everyone’s looking at you and having panic attacks and really, really freaking out and you just can’t do it so you just don’t? Is it about… you’re under so much medication that yes, you’ve got a license, but you actually can’t legally drive your car because you’re so dosed over? So, it’s that sort of stuff is about mobility. It’s different. It’s a very, very different thing so you need to start thinking about those things. It’s about even things like cleaning for instance, you know. You don’t need someone to come in and teach you how to clean You know how to clean. You just can’t clean. Yeah. Absolutely. You just can’t clean. So it might be, or you just can’t cook. You might know how to do it but you just can’t do it. It’s just not within you to be able to do it and you know what I’m talking about and so it might be that through the NDIA – NDIS that you get someone in to clean the house, not to teach you how to do it. You don’t need to be taught how to do it. You just need it to be done. And then the ramifications from that, or the the flow-on effect from that can be… a huge weight is lifted from your shoulders Because you know that it’s done which then means that you could possibly be open to inviting people to your house that you haven’t before because it’s been so freakin messy, you know, and it bolsters your your whole self confidence. I mean, these are the things that they were talking about. You know, memory and concentration. They’re all things that can be affected. I’m very aware of time so I’m skipping through. Okay. So what I want you to do is start spending some time thinking about how your life is being impacted by your mental health condition. By looking at those things. I hate asking you to do it, but you really actually need to start doing that Think of the times when you are feeling your worst, because… I said before, you know, you can kid yourself. You know, you can think, “oh, yes I can – I can – I talk, I’ve got friends! I talk to people!” Do you really? You might talk to people but have you really got friends? Friends that you continuously see and have that relationship with and all that sort of stuff? It’s… yeah, you might be able to walk up the street and post a letter on your good days. On your bad days, you might be able to do that. But how much effort is it taking you to actually get out and walk up the street to post that letter? So we can think that we’re absolutely a-okay, you know fantastic because we’ve done this, whereas for other people, they wouldn’t even give it a second thought to walk outside and post a letter. You see what I’m saying? And so we can say yeah, I can do that. I can do that, no problems, you know, and if that’s what you’re telling the NDIA, that’s what you’re telling the LAC, how do they know different? So you actually need to be very, very honest with what’s going on for you. So, ask those around you what they noticed during these times because you also might be thinking “geez, I’ve been just so wonderful today. It’s been fantastic”, and and your partner or someone like that might might think “oh my god… they have been so manic at the moment”, so you need to ask those around you too. And start to write it all down. Then, if you’ve been accepted as a participant into the NDIS, the planning meeting’s next so you need to start thinking of some goals that you may have. And this is really important when – when you’re thinking about “I don’t want to go back to bed. I don’t want to go back to bed”, you know, say you eat n’ eat and put on weight and your pills put on weight and all this sort of stuff and you know, that’s what your day is involved and you don’t even think about leaving. You need to start thinking of some goals. They can be big, they can be small. That might be “I would love to go on a world cruise”. The NDIA or the NDIS isn’t gonna pay for you to go on a world cruise, but these are your goals. These are your dreams. They can be as big as you want or as small as you want. You know, it’s about actually starting to cultivate dreams, in a sense. Nothing is right or wrong because they’re yours and at this stage – this stage, they’re letting yourself dream. So there are many many different ways to set goals. So – and you can find them on the internet. You know, life maps. This is – I love this one for those that have really, really struggled able to think about it; It’s your own little – own little board. You know, where you see something on TV, you hear something, you read something, you see something, you think – “oh, it’s not too bad!”, write it down and put it on a board and do that for a month or three weeks and stuff and see how many things you can come up with because then you can cull them, but it’s getting your thinking. And then if you know what your goal is, then you can work out what you need in order to get there. That’s the aim, and it might be you’ve got to go or you wanna do a degree. Fantastic. That might be a year away or two years away, but to get to that goal, you know that you need to leave the house. So start working on leaving your house and socialising with people and feeling like you can talk with people, and and not panic when you’re around people. So that might be the first year’s goal. So then getting back to what you were talking about, how you actually you don’t have to set it up like this specifically but this is an example. So, you’ve got your area of need whether it be, you know, mobility, communication, like we talked about before, then you’ve got your psychosocial disability. Focus more on the functional impact – the functional implication than the – the psychological one because that’s what the NDIS is wanting you to focus on more. Then, what sort of support do you need in the frequency of support? So, for example for mobility, if you’re really, really anxious, you have struggled leaving the house, so you might need someone to accompany you shopping for two hours a week. Or you might need someone to take you to an activity for three hours a week, so that’s basically five hours a week that you would need a support person to come and take you to these things, an example. Yep? Because your goals and dreams are going to be so much different to the person next to you; it needs to be tailored to that in that sense. Things like… gym for instance. That’s a big bone of contention because gym memberships were being given, now they’re not being given. The – the NDIA mental health team saying “well, yeah, they should be given”, but you then speak to other people in NDIA saying “no they’re not”. So, it’s a big bone of contention. Even though you have occupational therapist – get occupational therapists to write up stuff because they’re absolutely brilliant at making those linkages. Even with occupational therapists writing up, people have been knocked back so link a few together. The reason being is that comment from the NDIA will alert everyone. Everyone wants to go the gym, so it’s an everyday type thing So, therefore it’s not unusual, you know, whereas it’s slightly different for people with mental – mental… health issues, and since that one because of their mental illness, it’s really, really hard to actually hold down a job, to have money coming in to actually pay for that. Medication is actually – that you have to take in order to do stuff, is gonna pile on the weight, and then with that then becomes a whole you know, feeling really bad about yourself and the whole withdrawing from stuff. So to have this healthy lifestyle, instead of saying going to the gym, but link it you know, it may be you know, exercise with the provision of assistive equipment, with training. So you don’t have to – don’t say a gym, but say what is that that you need. Or it might be you saying a gym because – and then link it with other goals like: it’s gonna help you some socialisation because there are groups that make every single weight in a gym, that are going to be the same groups so it’s been I hope help me this socialisation. So that it’s gonna help with your communication because eventually you’ll start talking to them because you’re going to start feeling feeling comfortable with them because you see them each time. So you can link a number of things, a number of goals, to one outcome because that’ll make it easier. -[CROWD] We could actually all sit here and listen to you all day but I was wondering if there was some questions to, you know, pack up shop on us in a minute. -[JENNY] What I’ll do is – if I could leave the overhead slides, then people can access them. Also, on the VMIAC website, I’ve done some YouTube videos, animated YouTube videos. They’re smaller bite-size ones. So they’re really easy to read, basically going over some of this stuff. So look on the VMIAC website for those things.

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