Introduction to the NDIS for Mental Health Carers

Introduction to the NDIS for Mental Health Carers

Lynn O’Grady: Welcome good afternoon to the introduction to the national disability insurance scheme for mental health carers webinar It’s great to be here on a Friday afternoon and have many of you joining us and a fabulous panel who i’ll introduce in a moment to answer a lot of your questions so we are really looking forward to a very useful hour to give some real insight into how things are rolling out with the scheme at the moment. My name is Lynn O’Grady and I am a community psychologist and I’m from Melbourne and I normally work with the Australian Psychological Society managing some of their national projects and I’m very pleased to have been invited to be here today to be the facilitator to help us work our way through what will be a really interesting afternoon. I’d like to begin with an acknowledgment of the traditional owners of the land and pay respects to elders past, present and future for their ongoing contribution to our society and also recongnise the challenges that they face. Paying respect to any elders who are joining us today as well. The way we’re going to work through the hour today is to have some presentations from the panelists and then we’ve got some time quite a bit of time for some question and answers, so we’re really wanting you to think about some questions hopefully youve got some written down already have them ready, tick them off as the presenters do answer some of them but then have the others others ready for us when we get to that point and we’ve got some people here who are moderating those questions will be sending through to us so we can ask them and hopefully have some conversation that will really make it as useful and practical for you as possible. I’d like to also and being Carers Week particularly like to pay attention to the significant roll that mental health carers play in supporting and caring for people with mental illness and acknowledge the invaluable expertise that’s developed through this life experience and really wanting to make sure that that voice and carers comes through today. The webinar was made possible by funding provided through the Australian government National Disability Insurance Scheme sector development fund so we are really grateful for that funding as well. Now of course when we are talking about some of these issues which will be tapping into the personal experiences of carers and that thinking about you watching this at home or from offices out there we’re really wanting just to alert you to the fact that sometimes this can be at bit upsetting it can sometimes get us thinking about some of the challenges we have. We’re really hoping that this will be a hopeful session and might actually give us a lot of positive ideas and help us to see that there are ways through and to hear, particulary from Janet, one of our panelists about how this scheme might be useful for us But wanting to alert people to the fact just take care of yourself, do what you need to do to look after yourself and Lifeline is available needing that 13 11 14 is that phone number and Carers Australia have made a 1800 number that wont be available until Monday, or before 5 o’clock, next week 1800 242 636 and also bear in mind this will be a podcast that will be released on the website later on so if you know today’s not the best day to be participating in his, you can look at it later on so that’s another option so just a reminder there I’m really looking forward to hearing lots of ideas that hopefully by the end of the hour you will have some new information, some new ideas and some pathways of where to go if you want some more information. Now I’ve been talking about this panel so let’s introduce them you can see us all here some of us are here in the Carers Australia office in Canberra and Mark Rosser is going to by his colleague Stephanie and I just have to remember my pages to find, Stephanie Gunn and she is here but we can’t see her – saw her hand a moment a go So Mark and Stephanie and in the National Disability Insurance Agency in Geelong and the rest of here are at Carers Australia office. so let’s introduce people so you know who we are we are maybe they’ll give us a wave – so we have Ara Cresswell at then end of our panel here. So Ara is the Chief Executive Officer at Carers Australia, next to Ara we have Frank Quinlan and Frank is the CEO of Mental Health Australia and next to me between Frank and I we have Janet who is a mental health carer with NDIS experience and then as I said we have Mark and Stephanie from the National Disability Insurance Agency Geelong joining us today. Mark is the Assistant Director of the mental health scheme practice approaches in transitions. That’s a very big title Mark and Stephanie Gunn is the General Manager for community linkages. So we have got all of that introductory information out of the way and hopefully you’re starting to think of some questions and send them through at anytime or comments we can do Q&A comments as well if that’s what people would like to do just so we make sure the voices of you at home are coming through to us. And let’s begin with you Mark and Stephanie as well to provide us with an overview of the NDIS, particularly with a focus to psychosocial disability support and mental health supports – thanks Mark. Mark Rosser: Okay, I might just start by saying that we’re having a few internet troubles and so look with the PowerPoint pack that we had prepared can be made available to people later so I will do my best. Thank you very much for the introduction I have a robust five minutes to get through what i normally present in about 45 minutses so please accept my apologies if I am skating through it quite quickly. So first of all thanks to Mantal Health Australia and Carers Australia for the opportunity to present today and of course Carers Week – a very special shout out to all [inaudible, internet drop out] thank you very much for the efforts you make on a daily basis. Just a little bit about myself so I spent the last 10 years in community mental health in the provider markets so I certainly have an understanding of the transition of the NDIS into regions at the momen. Some of the work that I’ve done in the past too have been carer related and I’ve really enjoyed the opportunity of meeting with the wonderful people who care for people every day with psychosocial disability. In particular some of that that carer work has been focused on peer work development and supporting carers through training and other opportunities for the participants they support. So I’ve been asked to do pretty much three things just sort of… [inaudible] … and looking at supports in the NDIS. So away we go – so first of all just some really basic overview. The NDIA which is the agency that Steph and I work for are charged with the responsibility of implementing the NDIS which has been enshrined in legislation from the NDIS Act of 2013. So we’re charged with the responsibility to deliver the Scheme a large part of that Scheme is structured through bilateral agreements or agreements between the Commonwealth government and the state or territory that you live in. So, it’s our job to make sure that we observe what’s been agreed in those bilateral agreements. We are here to work with partners within the community to do some of that implementation as well….. [inaudible]….so first of all some of the principles that underpin the Scheme obviously people with disability have the same right as other members of the community to realise their potential. People with disability, their families and carers should have certainly that they will receive the care and support they need and people with disability should be supported to exercisechoice and control in the pursuit of their goals also the NDIS principles align with the United Nations Convention on the Rights of Persons with Disabilities and of course the National Disability Strategy. So what is the NDIS? The NDIS is obviously a new scheme that focuses on supports for people with disability but it sits alongside other supports and services in the community as well. It really will work very well in communities as long as other service systems are working ….[inaudible] ….and access to community and support services that are out there now and available to everyone but its also about providing reasonable and necessary supports and helping people access mainstream services as well. I think that in particular for people with psycho-social disability those mainstream services in health and/or mental health, education and employment need to be doing their jobs as well as the NDIS doing their job for participant outcomes to be a well met. The pillars of the NDIS are based on insurance approach, choice and control and community in mainstream. Its worth touching just quickly on those points – the insurance approach is about investing early in peoples lives and in particular in their plan cycle to make sure they can achieve ….. [inaudible] …..the right to choose their providers but also the depth of choice and control I think for the first in this sector is far more vast than what they have been previously. So people can start to influcence when and where their supports are provided and by whom, choosing perhaps a peer worker. We just lost our IT choosing a peer worker over a more traditional support worker and of course what time of day, weekends type supports all those variables come in to play in choice and control as well. So as I said before the NDIS is designed to work alongside other supports services and in particular mainstream support services as well so we are observing Commonwealth and Australian governments have developed a document known as the mainstream interface principles and it… [inaudible] ….it really documents responsibilities the NDIS has as opposed to those other services. Also the NDIS is not purely about participant packages and Tier 3 packages as they’ve become known. There are other elements to the Scheme as well part of that is what we call ILC which stands for Information, Linkages and Capacity Building. So from the middle of next year that will convince the A.C.T. and then progressively rollout in other parts around Australia. That is designed around information, linkages and referral, building capacity for mainstream services, community awareness and capacity building and of course individual capacity building as well. It’s a grant focused program and for providers out there.. [inaudible] Another part is Local Area Coordination as well so we will be partnering with organisations within communities to help us provide some of those local area coordination services. So it won’t just be NDIA staff that carers and participants will have contact with to understand the scheme and access the scheme. We will be partnering with community focused organisations to help us provide some of those supports and services in local communities. Again, further information is available on the NDIS website for them. Just a bit of background about mental health in the NDIS as well. So traditionally the disability service sector and the clinical…[inaudible] ….were starting to integrate ad provide some excellent recovery work and we of course hope that those kind of practices will continue. Psychosocial disability wasn’t, well it came in late to the Scheme through some extensive lobbying from carers and participants about the value of the Scheme to people with psychosocial disability. And I think in particular from my experience that the advantages for people to recover through the design of the NDIS far enhanced from the previous system. Just need to be mindful at the same time there is significant reform occurring in the mental health system so at the end of 2015 the Commonwealth government reviewed all of the Commonwealth programs and made some determinations about what programs…[inaudible] …[inaudible].. In addition many states and territories are looking at their own mental health acts at the moment as well. The entire picture of how people with supports or required supports in relation to mental health will be delivered isn’t quite clear yet within Australia and there’s a fair bit of work to go particularly for people who probably sit outside of the scope of the NDIS – more work on that upcoming in this year in particular. Some of the data in relation to psychosocial supports – so as of March we had 2945 people within the Scheme that had a psychosocial disability and about 2,100 of those have a primary psychosocial disability. I think the other important stat to look at is about 75-80% of people ….. [inaudible]…. …quickly touch on NDIS and recovery. Recovery practice absolutely crucial to how people journey through their recovery when they have a psychosocial disability something that has developed over the last 30 years in community sector. So some of the essential components of the NDIS support recovery very well. Choice and control for participants, a lifetime commitment of supoports – a significant change for the sector in the past the sector was operating under two and three and four-year contracts from state and federal governments and often held together with philanthropic funding around great initiatives. Now we have the NDI, people will receive a lifetime support for their recovery. So once you’re in the scheme you’re in the scheme…[inaudible]… Lynn O’Grady: Mark, it’s a little tricky to hear you at the moment, so I’m just wondering if we might just stop you there I’m not sure if Redback is looking into into that but I’m just concerned that people might not be capturing all points and we are sort of wanting to keep moving as well. So we’ll come back to you when we get to question/answer time if there are things you really want to pick up on you can pick up on it there. But if its okay we will give Redback some time to work with you on what’s happening and we’ll move on to Janet to give a perspective about some of her experiences she’s been having this year as a carer – so thank you Janet. Janet: Okay, before I begin to tell you about my experience I acknowledge that this will involve sharing some of our son’s story and want to reassure you that he is aware of this and understand that I sometimes have to share some of his stories with others in my role as a mental health carer representative. I have sought and been given his permission to relay our experiences of the NDIS process as his support person. My son has a psychosocial disability having a chronic severe ongoing mental illness and complex needs. He is the reason for my involvement in mental health advocacy and taking up the role of a carer representative. I have been involved nationally and locally in many different forums on the NDIS. So it came as a shock to me that I was overwhelmed and anxious going through the process for myself. I put this down to our experiences of the mental health system for over 10 years. We have learnt not to trust and to be cynical. The NDIS was our last hope and so we began the process in trepidation, several months before our son was eligible to access it. We knew that it could take a long time for him to trust and engage mainly due to the symptoms of his illness, medications and past experiences. At this time my son was at a mental health rehabilitation facility called Brian Hennessy Mental Health Rehabilitation Center. And the application forms for the eligibility of NDIS were sent there. This was an advantage as the psychiatrist was able to complete his part of the form without us having to chase him up. He also knew our son very well. The application form was hard copy which actually became a stumbling block for us. Here we were in the 21st century used to completing forms electronically. Being asked to provide hand written information and restricted boxes, not being able to type, think, edit or fit all the information in the allocated boxes, illegible writing – running the very real risk that the NDIA would be unable to decipher and assess his eligibility for the Scheme. We contacted NDIA for an electronic version but were told they did not do that. However being resourceful I managed to obtain an electronic version from a mental health NGO and as my son does not do paperwork we completed the form and provided all other reports and information that would assist the NDIA in making an informed assessment. During the pre-planning stage my husband and I attended a carers information day specifically aimed at carers of someone with a psychosocial disability. We were also given information, carer statements and a mental health carers checklist guide. We completed an electronic copy of the mental health carers list. The crucial part of our pre planning preparation was to use my fellowships ‘Your voice Your choice’ project. The consumer peer worker employed in the project gained our son’s trust and over several meetings over several months managed to engage with our son to assess examples and aspirations he had. The Peer worker also met with my husband and I for our input into what support services were required for their son to live more independently and achieve his goals. He then met with my son to get his approval of the additional supports my husband and i had suggested. The staff involved in our sons rehabilitation also contributed to the plan to build under what they were doing for his recovery. The plan was drawn up, approved by everyone for presentation to the NDIA mental health planner. Finally all involved in our sons care and our son met with the NDIA mental health planner with the proposed plan and the mental health carer checklist completed by us. The mental health planner approved of the majority of our plan. The provision of a support person to stay overnight in the event of our son becomingunwell was not approved as the NDIA did not allow overnight stays in a one bedroom home. We manageed to get a pretty good plan. We now have a good service provider with the support co-ordinator with ongoing relevant support that we have control over and that will evolve as we find better ways to empower our son to have the life he wants. Lynn O’Grady: Thanks Janet and lots of information in ther, I’m sure people might have some questions and want a little bit more detail around some of those things. So some of the questions might relate to that. We could already hear some of the language that Mark was talking about coming through in your presentation so hopefully we are starting to join some dots here so thank you very much, really important for us to ground this in and what its like for you and your son so thank you very much. Moving right along as well now to Frank Quinlan who is going to give us an overview of Mental Health Australia’s work in this area. Thanks Frank. Frank Quinlan: Thanks Lynn and thanks Janet for that account. I always feel like my work becomes increasingly theoretical whenI hear these practical stories and I think you’re sharing of those stories really does help us to sort of ground our work and properly understand what it is we do, so thanks to you and your family for doing that. Mental Health Australia that some of you will know is a peak body. We represent a lot of organizations who work in the mental health space across the country and so we had an interest in the National Disability Insurance Scheme from the outset, including the debate that Mark talked about earlier about whether or not mental health should even be included or not in the National Disability Insurance Scheme. Because that was a moot point at the time. We still feel really that mental health has sort of been a bit late to the party in some ways so much as we welcome the NDIS and as much as we cemmend a lot of the work that the NDIA is doing to bring it about, we still have been a bit of a sense that we’re are a little bit behind things in the mental health space because there’s so much to do and and so little time to do it. So as Mental Health Australia has an interest in this issue anyway but happily we’ve also been funded through the sector development fund to do some particular work that’s around getting consumers and carers ready for the NDIS but also getting our own members who are the service providers who are likely to be providing at least some services into the NDIS ready as well. Mark also pointed out that the NDIS is really created out of an agreement between governments and I’d been being dishonest if I didn’t say there aren’t still some challenges for us in terms of the way that those argeements are put together and so we still have a concern and an uncertainty about exactly whose gonna end up in the NDIS in particular but then also who’s left outside the NDIS and how many people might be outside NDIS and what sorts of services and programs are going on for them. But happy to be talking today about the work that was funded at the sector development fund to do this work. The first thing that Mental Health Australia did was to establish a consumer and carer reference group which again taken the experience of people like Janet and her family allowed us to ground our experience in the real world experience of what it was that people were trying to get through. We developed a discussion paper that helped us outline a whole raft of issues that might affect people and in particular the key barriers that are faced by mental health carers in this space. We all know there is a lack of stigma, that there’s too much stigma and lack of understanding. We know that the episodic nature of mental illness also causes issues because people are not always unwell there support needs are not always the same, they can escalate and deescalate and again as Mark acknowledged in his introduction there was an eagerness not to lose that sort of recovery oriented practice which while still imperfect in own sector is something that has been developed over any number of years. So that initial report offered some practical recommendations about strategies that could be taken up about providing accurately and timely information about building the knowledge of the National Disability Insurance agency staff and you know I think it’s worth acknowledging that the NDIA are certainly are committed to being, what they discribe, as a learning organisation so this is say that they don’t always get everything right the first time neither do we but the NDIA I think do demonstrate their commitment to working on those issues and to getting those right eventually. We also did some work with Carers Australia and were pleased to get Carers Australia to help develop a carers guide. I will give you a URL at the end of my little presentation that is available to help people with their planning needs around NDIS. As Janet said, this is a new process and the process is changing all the time and I think ensuring that there’s a good understanding of what it is that needs to be done with their support. Some of the other things produced include some plainer language explanations, some plain English explanations, a checklist so that people can actually go through the process and we also some of you may well have participated already in a series of workshops that the Richmond fellowship ran, some peer lead workshops with consumers and carers nationally to help build that engagement in the NDIS. Those workshops are now complete and we will soon be able to upload some resources that come as a consequence of that. So so really I just wanted to say that there’s a lot of work that’s being done in a space. It is imperfect but there is some very good work available and Janet mentioned some of it. If you go to Mental Health Australia’s home page at then you should be able to get access to those resources and very happy to take some questions on that at the end of our little session today. So I might leave it there. Lynn O’Grady: Right thanks very much Frank we do have folder that you will be able to see on your Redback page that you’re looking at. Down the bottom on the right hand corner there is a little folder that looks like it has come out of a filing cabinet so in there we should have those documents that Frank’s been referring to so have a look in there but certainly look at the website as well. Thanks very much Frank and I guess what we’re hearing is many organizations working together which is one of the points that Mark also talked about that is this notion that system’s working all together is what’s going to make these resources feasible. So we just have some examples of that as well. So I guess along theat same theme let’s move on to you now Ara from Carers Australia to give us a bit more information about the work you’ve been doing. Ara Cresswell: Thanks Lynn. It is National Carers Week. It is a time when we acknowledge all carers, when we celebrate carers and its a time when we say thank you. On the you can all say thank you. So today I guess we say thank you to Janet for being here and sharing a very personal story because it’s always a bit tough for people to share a personal story so we we had a long week National Carers Week and an exciting week. It’s good to be finishing that week with a look at carers of people with psychosocial disability because there are very unique caring situations. We know that every caring situation is different and we acknowledge that we can never get it all in one but we’re working about we’re working to develop the resources that we need. We know that in the NDIS carers play a significant role in working with someone around the develop preparation for plan, the development of that plan and the implementation of that plan. So we know and we have heard from Janet about that today how important is to work together as a team to get the outcome that we need that is in the best interests of the person who is working that plan. We know that the NDIS is about the person with a disability not about family and carers. But we know that those people are really important in giving life to those plans and in preparing something that works for everybody. So i’ll talk a little bit about the carers statement. Most carers don’t realise that they can that a carers statement is available but they can development a carers statement and they can have that on file. It’s really important for carers to be able to document the things they want to say and there isn’t a preformer, there’s no detail about how that ought to be but carers get to do that individually it might be something that says I can do this much caring but I am getting a little be old and I can’t do it and these are the other informal supports that the person has, these are the things the agency or the Local Area Coordinators to take into account. So it might, it be will always be something different and it was always something a little bit unique but it’s important that as a carer you get access to looking at that carers statement. There are two statements on the Carers Australia website ( If you look up NDIS, there are 2 carer statements up there that are real-life examples that have been can be used to tailor the message that you would like to tailor. Also on the website is the resource that Frank referred to which is both a guide and a checklist. And the guide gives you information about how the NDIS works, it breaks down the language, it makes it accessible so the guide is there about all the details. The checklist is much more practical tool to help you get ready to help you plan, prepare and organise, to be ready to walk into a planning session. Along side those things you will find on our website access to what we call our Peer Partners. So these are people who are carers and have been through the NDIS with somebody and who are willing to work for nothing to help you. So our Peer Partners are people who are prepared to give you some time to share their experience, to share thir hopes and to share what you know how it’s been for them and what mattered for them. The Peer Partners are available at a time that is mutually convenient for you and they are they’re willing to work with people in what ever way works best. So we can we can make a time at 8pm at night we can make a time that suits you and suits them. We have some mental health carers who are Peer Partners andthey’re available, the way to access them is available by checking our website. We encourage you to talk to the Peer Partners. The response back has been overwhelmingly positive. That carers have felt like talking to another carer, talking to someone whose experience has made a difference so I guess my take out message from today is that help is there and resources are available support is available. We’ll do everything we can to get you that information. Lynn O’Grady: Right Thank You Ara, finishing there on a really positive note which is just really very helpful and really important I think and reaffirming of the work that people been doing. So we are now at a stage of questions and answers which i think is going be a really interesting time and we’re interested in what sort of questions are coming through and I can see that there are some coming and we’ll come back to Mark some of the questions might be wanting a bit more information from you but the first one is really a carer question, so I will get you ready Janet as I read through this. Its quite a long one but I will read it through and there are a few parts to it and then we’ll we’ll start with Janet and then other people might like to jump in as well we can have a bit of a conversation. So as a mental health carer who has had experience dealing with the NDIS and receiving support, my question is when being eligible and coming up for a plan for the loved one you care for did you have to provide evidence about their mental health issue? And was it reports from psychiatrists, psychologists? Janet: There are some parts to it as far as it goes to psychiatrists and physchologists as well as GPs because in my situation my son was in a facility so the doctor actually got the forms but I think when you get the forms sent out you get the whole pack of forms you have to take it to the psychiatrist, the doctor or the GP to fill in the part from a medical profession point of view. They do require evidence but you can also if you’ve got any reports or psycological reports or anything like that it’s good to attach them and provide them to the NDIA as well if you can get them as much information as possible. Lynn O’Grady: Okay, Mark is there anything to add to that in terms of the requirements to evidence around the psychosocial disability? Mark Rosser: Yeah absolutely. The NDIA have recently released…[inaudible] …..NDIS tips for communicating about psychosocial disability. It is available on our website. If people are having trouble digging around the website and finding it please let me know and i can forward it on to Carers Australia to share with their memebers. It documents pretty clearly what our access team is looking for in relation to satisfying the criteria within the act and its talks about it talks about getting a statement from your GP or psychiatrist about permanency or likely permanency. It talks about the experience or history of the psychiatric illness that the person may have experienced and then if any ongoing functional assessment would have been completed as well so it’s a really good guide, its only three or four pages long with some clear descriptions around what’s required in the access process. Lynn O’Grady: Okay great thanks Mark and I guess one of the good things that getting these questions is we know what people are needing and if we can make it easier for people to get to that particular point on the website that would be really helpfu, so we will see what we can you can do to make sure people can access that easily. There’s another question for you Mark – so this will give you a chance to maybe to pick up on some of the things that you were hoping to to talk about, that you might cut you off before.What supports will be funded under the NDIS for a person with psychosocial disability? Mark Rosser: There’s a range of supports. Obviously the NDIS is participant focuse, so each and every person will have different needs. I think some of the most common areas that we are seeing arrive in people’s plans are to do with capacity building and/or core needs. So one of the first…..[inaudible] ……really included is participants who are experiencing psychosocial disability so Partners in Recovery is a services available at the moment around Australia and a lot of the work that Partners in Recovery have done is around helping people coordinate the supports and services they need. So the inclusion of support coordination in a participants plan we’re finding is an absolutely valuable resource for people participants and of course carers. The feedback we’re recieving from carers around the role of support coordination is absolutely critical to help people both understand how the NDIS works but also work on building their capacity and choice and control around the support that they’re wanting as well. Of course other supports that often are in play also provide an effect or a carer effect or for the carer, so at home supports… …..[inaudible]….there’s also supports around helping out with their daily living skills around home as well and that might be learning new skills or relearning skills as well to do with their daily supports as well. Of course the price guide with the NDIS is quite robust and there are a range of supports we divide things into core, capital and capacity-building so plans these days include a range of supports within those three C’s and there are 15 different budget domains that generally hover around outcome domains around people’s life, their relationships, their health and well-being – all of those elements that are quite common in recovery practice as well. So I think when people take the time to learn more about the Scheme and that may take some time….. …..[inaudible]…. well immersed within the price guide and a range of different supports helping out to increase one’s health and well-being, understand their daily living skills, access mainstream supports and of course access to GP’s and psychiatrists and that assistance that people often require is all mapped out in people’s plans. Lynn O’Grady: Right thanks very much Mark. Frank Quinlan: I wonder if i could just add to what Mark said and I apologise – we can’t hear all of your answers here Mark so I apologise if you’ve said this already but I think it’s important to note especially in the psychosocial disability space that there is quite a bit of potential boundary issues between what the National Disability Insurance Scheme provides and should provide and for instance what the health system provides or other systems provide. I think it’s just worth acknowledging that we’re still really working that out a bit as we go, those boundaries are not always clear. The other thing that I think can be a bit unclear across the whole scheme really is what what can legitimately be included in a package because i think the whole idea of the National Disability Insurance Scheme is not just that it provides more of the same in different ways but that it actually enables people to make choices and so I guess both of those things really say to me and listening to what Janet said I think the best advice we can give to people is to really really prepare, to the extent that they can to talk to peers to other carers, to use Carers Australia to gather as much information so that they can be appreciative of what the possibilities might be because you might not just simply might not know what those possibilities are. And the second bit of advice I give is to really be prepared to go into battle. The things that you really think are important and that might be a long that might be a long process and you know we might have some learnings to do there but i think it’s just so important that people are advocating hard to make sure that they are getting the sorts of supports that they really do need. Janet: Yeah and at each individual time. The role of the support coordinator takes a lot of what a carer does because the carer is usually the coordinator and and the go between and joining all the dots so it’s a really important role and it really helps that carer but what I think it’s also really important for when you’re doing a package to let NDIA know exactly what the carer does provide for the person because the person doesn’t always recognise but the carer does or what is done behind the scenes in the amount of emails and phone callls and going to different parts and trying to research and all sorts of things. So it’s important for NDIS to know about that so that they can take that into account in a package and I guess the support coordinator potentially does a lot of the work that the carer used to do. …[inaudble]…part of it because they will still be involved. Lynn O’Grady: Alright, well that’s hopefully giving people some sense of opportunity that is there but obviously take some time to really fully understand what it all means what I’m also hearing. We’ve got another question and we’re going to direct this one to Ara. Are there any young carer support workers to help them navigate the NDIS? Ara Cresswell: Sadly I’d say that the resources available for young carers are woefully inadequate, knowing that young carers play a sizeable role in the well-being of people we would like to see much greater focus on young carers. We know that in relation to the NDIS, young carers fall into two categories – over the age of twenty they tend to be there as parents or as partners. Under the age of twenty they tend to be there caring for a parent. We also know that for many it’s very hard to engage. There are young carer workers in every state and territory, again I direct you to the Carers Australia website and to your local carer association. However those young carer workers have an enormous amount that they are doing because as I said the resources are very very limited. We’d like to support young carers in whatever way we can. We know that having recently, we’re in the process of giving out young carer bursaries. We’ve had 1200 applications or over 1200 and many of them tell u, they are caring for somebody with a mental illness. Many of them tell us that is a parent and these are predominantly people under the age of twenty that it’s impacting their schooling and impacting their social activity and it’s certainly impacting their financial situation. It would be interesting to hear from Mark about wether the NDIA is looking at young carers as a special category if there are any resources specifically available. We are doing whatever we can with our resources, our limited resources, to ensure young carers are getting access to services. The reality for many of them is that the person that their caring for is not going to someone who will qualify for an individual support package under the NDIS and so for many of the, it’s still a bit of treading water to see what’s happening. Lynn O’Grady: Okay, thanks Ara. Mark would like to add anything to that? Mark Rosser: Yeah I would. Just be mindful too still having IT trouble here too so apologies if it’s coming across all garbled. The NDIS is participant focused, so we are really not focused on whether the carer is of a particular age. Obviously the carer role is what’s valued and is important to maintain within the NDIS as well. So the processes that we go through certainly understand what care and supports are being provided for at the moment for participants or potential participants ….[inaudible]….in that participants plan will support in their role and also look to provide that carer some opportunity to enhance their participation in community as well through providing care and support or relieving some of those supports that are provided so to can increase their social and economic participation as well. So I think the take-home message from me today too is that the NDIS processes are very supportive for family, friends and others that are involved in participant’s lives. Yes it is a participant’s plan and funding is wrapped around that individual but it isn’t blind to the role that the carer provides and we need as much information from carers, from participants, from loved ones, from other service providers so that we can….[inaudible] …[inaudible]…Lynn O’Grady: Okay, I think we ‘ve lost you again Mark. It’s a bit tricky, it was going well there for a while thinking it might have been fixed bit it’s still a bit tricky. But i think we probably got got the main message there and I think we’re happy to leave that question there and move on to the next one. So thank you and I think the next question is for you anyway when I can see it. Which question am I looking at – there we are – I knew it was there. So the next one Mark and then Janet you might like to comment on this if you’ve got experience that relates to it. So Mark, if a recipient has completed their initial report, is it reviewed within six or twelve month period? Or is it set for certain amount of time longer time perhaps? Mark Rosser: Okay so there’s a couple quick answers to that. At the moment we’re working on first plans okay so for a lot of people….[inaudible]… working on notion of a first plan which is for a twelve month cycle. So in general all plans are plans are 12 months and then they are reviewed. The review process takes in the views of the participant, the support coordinator and obviously the carer and other supporting people as well in the process. There are extenuating circumstances from which plans can be reviewed within that twelve months cycle as well. Lynn O’Grady: Okay thanks very much Mark. Janet, any comment on that from your experience? Janet: Well we haven’t come up for a review but I there is quite a bit of flexibility in the plan. I mean there is the amount that you get is fixed but there’s flexibility with a support coordinator as you know there’s going to be a few teething problems about how much you know maybe if you getting supports for a specific task and stuff like that you might start with somebody coming in every day and then find that too much and the, so there is flexibility to change something within your plan if its affects what she needs. Lynn O’Grady: Okay, within that period not waiting for a review. Janet: Yeah, not waiting for a review. Lynn O’Grady: Great, and I imagine that’s pretty important when we’re talking about people with psychosocial disability or mental illness because often things can be okay for period or so or deterioration can come into play. Janet: Yeah well there can be fluctuations but there’s also and I mean you can imagine if there’s a lot of people coming into your home it can be very uncomfortable and it’s good that they can build a rapport with the person who’s coming in to help and have a few people and things like maybe supervision of medication and and with some medications if they miss it for three days it can be really drastic, so they like to have somebody come in and check a webster pack or something every 2 days. But there’s also you know whatever if they want to do another activity or they might want to go visit a friends somewhere there’s flexibility as long as you’ve got the funding there is flexibility within your plan and with your services wider and your support coordinator. Lynn O’Grady: Yeah, okay. Ok well let’s move on to another question. Our time is disappearing very quickly as it always does when we have an hour to get through a lot of information but hopefully this is proving to be useful and if you do have a last burning question please send it through and we will do what we can to answer it. We’ve got a question now that we’re going to begin with you Frank and then perhaps move on to Mark. What happens to those who don’t choose to enroll in the NDIS but that are in need of NDIS supports? Frank Quinlan: Sure, well the NDIS can only provide people with support if they are in the Scheme so the first thing I’d be encouraging is that if people have a need and the NDIS can offer supports I would be encouraging them to explore that possibility but that won’t be what everybody does. As I said my introductory comments before, it’s also important for us to recognize that the National Disability Insurance Scheme doesn’t replace the health system. The National Disability Insurance Scheme doesn’t replace the community mental health system. The National Disability Insurance Scheme doesn’t replace the work of psychologists and social workers and the others in the community. And while we are certainly in period where there will be some challenges about working out what those boundaries are, it will be important to recognise that services should still be provided in the community but Mark also pointed to a couple of things that the NDIA will be doing at the sort of fringes if you like of the Scheme itself. I think all information linkages and capacity building which aims to put people in contact with all of those services outside of the NDIa that they might get access for and that’s something we’ll start to see the NDIA rolling out. And we also know that the NDIA will be doing some working in early intervention and prevention sort of activities to the insurance scheme so they obviously will want to be doing activities that stop people eventually coming into Scheme, not to keep them out but because they’re actually healthy and well and don’t need the services of the Scheme. So that will be important work as well and as this Scheme is evolving we’ll see where the boundary lines rests with some of that. Lynn O’Grady: Okay, anything you would like to add to that Mark? Mark Rosser: I didn’t hear a lot of that im afraid so obviously you know the NDIS is a piece of of the puzzle in terms of supports out there for people so I will just reiterate that the Scheme, when fully implemented, will be approximately for 64,000 people with primary psychosocial disability so that’s that’s only a fraction of the people that have support needs in relation to mental health at the moment. So the NDIS will certainly be playing its part in informing what the larger service system looks like in making sure that we’re working collaboratively with MHA with Carers Australia with a range of other government…[inaudible]… Lynn O’Grady: Okay you froze again there. You go along on a really good patch and then we lose you but I think we are getting the key messages from you. We’re starting to get to a point of winding up so I guess one one last question and then we will hear from each of the presenters just with take-home messages and some people have been doing that already but i guess just in terms of some of things but that you might want to be a last message for people to take home. We will do that and then we will have to wind I’m afraid. So Ara and then maybe Frank what can carers and families do to prepare for the NDIS? Ara Cresswell: Sure, there are workshops all over the country and run by a variety of different people that actually are assisting people to get ready. We’d encourage that we’d also encourage you to start looking at all the resources that are available on a range of websites so if you look on the NDIS website and you look at the Carers Australia website and you look on the Mental Health Australia website there is a wealth of information. I think that that the resources there, something will work for you. Certainly the guide and checklist that Mental Health Australia and Carers Australia have done together is incredibly useful to mental carers with preparing for a plan. The other thing I would say is get documentation in order, everything you’ve got pull it together keep it all in one place and talk to other people. So if you you’re ready to go it will be worth having a Peer conversation with one of our mental health carers, have a conversation with them just to run through everything you’ve done. They might be able to help with one bit of it there might be something where they say – have you thought about this. So I suggest getting onto the net and having a quick look at how those Peer Partners are available to speak with you. Lynn O’Grady: Frank, anything to add? Frank Quinlan: Look I could only add just marginally to Ara’s excellent summary because i think people might just want to consider as you’re approaching this task that the NDIS is intended as a lifelong Scheme. You’re getting access to lifelong support and so I think that so just reiterate really how important the effort right up front is abut hopefully how worthwhile it is because it’s not something you’ll have to do over and over again. It’s not something you’ll have to reprove over and over again. I think Ara has indicated find the guides, get the information and I think if you learn anything from either of the people sitting on my left or right it is to talk to talk to peers. There are organisations with peer workers there are organisations on the ground who have some experience who are willing and able to try and help people through that process and I would really just be gathering as much resources you can to make sure the process goes as well as it possibly can. Lynn O’Grady: Yeah and I thank you. They might well have been your take home messages but you may have something else. Mark, maybe a take-home message from you and then we will come to Janet and hear if anyone else has got any last-minute ones. So like a minute wrap up really. Mark Rosser: I think the take home message is that we have well trained staff here with a lot of experience and understanding in the mental health sector. We understand the the range of people that require supports …[inaudible]… We’re working every day to make sure that we understand who the population is that needs to come into the Scheme and needs our supports identifying those gaps and then working with state and commonwealth government to address those gaps. So we’re confident internally here that we we understand what the sector issues are and we’re addressing those everyday. If you’re a carer out there supporting someone at the moment with psychosocial disability and that person meets the access criteria I’m sure that as the plan is implemented and the Scheme gows that you’ll understand that this is a Scheme that is well worth supporting and can provide a robust set of supports for you and your family and your loved one to make sure that they can have an ordinary life… [inaudible]… Lynn O’Grady: Okay, I think we lost you again but i think we got the gist of that so thanks Mark. Janet, your take-home message for people? Janet: Yeah well I reiterate what everybody else has said but having now been in the Scheme it’s a really wonderful thing and you get, well we’ve had more supports than we’ve ever had and its ongoing and together and yeah and it’s actually and we’re having to have a different mindset because we’re so used to having it you know this is what you can have and and this is only what you can have you can only have it for this amount of time so it’s it’s a learning curve for us as well so we have to change our mindset and and then think of things that we can do to and provide for our son to live the life he wants and to have what everybody else has. So it’s well worth – its a really good Scheme. You just need to prepare as much as you can and with people with a psychosocial disability this can take a long time you have to account for that as well and get as much information as you can. Lynn O’Grady: Fantastic, that sounds like a fantastic point to end if anybody else has got anything to add to that but I think hearing that last message from Janet, I think sends a very hopeful message that we can be creative in thisspace we can be hopeful about it there are plenty of people who are there offering help and are committed to doing this work is what I’m hearing. As a psychologist working in this particular area I’m hearing that there are opportunities to be creative and to talk with each other and get support and lots of resources there to help you. I’d like to really finish up now and saying thank you very much for everybody thank you Mark for persevering with our technical problems and we’ll make sure that weblinks are added to the podcast so that people can see that. Thank you very much to you Janet I really appreciated and I know everyone’s appreciated your imput today we know that’s a big thing to do so we really appreciate that because as I think as Frank said it is what brings any of our work to focus in what it means on the ground for people otherwise its not working. We really appreciate that and to Frank and Ara as well for your time today and Ara in such a busy week where you have been very busy all week as well. So really appreciate everybody’s support on a Friday afternoon and people at home thank you as well for your your participation and hopefully this has been very very useful for you and thatyou know where you can go and get some extra support if you need it. The recording will be available afterwards so look out for that on the websites and there will be an evaluation form when you go to close down from the web from this webinar there will be an evaluation form to fill in. So please fill that in because it’s always useful for us to have that information and its taken very seriously. So thank you very much everybody and good afternoon.

One thought on “Introduction to the NDIS for Mental Health Carers

  1. I think this was an informative and well presented session to help everybody who will be applying to and for the NDIS Scheme who have a psychsocial disability. I hope that the Carers will be included in the scheme as their imput is vital for these plans to be implemented and for the best outcomes for our loved ones.

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