Deafness Council
Held at the Boulevard Function Centre, Floreat Forum
Tuesday, 3 March 2020
“How best to access support for your hearing loss––with or without NDIS support”
Disclaimer:
The meeting was not audio recorded. This edited version of the transcript is provided on the basis that it is not a 100 per cent verbatim record and may contain errors.
Geraldine O’Loughlin accepts no liability for any event or action resulting from this transcript.
The attendees of this meeting contributed freely to the discussion in the knowledge that this material is not intended for publication other than to assist the people who wish to keep a record of discussions for meeting purposes. Please take this into consideration when reading their contributions.
Pictures from the 2020 HAW event can be found here.
Event Transcript
BARRY: At the outset, can I acknowledge the traditional custodians of the land on which we work and live and recognise their continuing connection to land, water and community. We pay respects to their elders past, present and emerging. In terms of acknowledgments, before I begin today, can I acknowledge a few very important guests. Firstly, if you can stand up as I do so, so people can see you, Dr Harvey Coates. He doesn’t like being recognised, but he’s our patron; an outstanding Western Australian. Thank you again. Eileen Stewart from Santos. Santos has been a long-time supporter of the Deafness Council. We run a scholarship program every year and Santos has been very generous supporters. Thanks for your continuing support, Eileen. David Gilchrist, who I will introduce in a moment, who is our VIP guest, when we’re doing the opening of our event. Geof Parry, who is not here yet; he is our MC for the Q&A. And can I acknowledge also, of course, Lotterywest, who sponsor our events, as they have done now for many years. I’ve said this many times before, we are so fortunate in Western Australia, as opposed to other states, to have a very successful lottery in Western Australia, the Lotterywest organisation. Most other states don’t have it as well because they have poker machines in all the clubs, and therefore they don’t have such a powerful lottery program that can sponsor organisations like ours. So if you have any influence over your politicians, make sure they don’t have poker machines in WA. There’s my political commentary for the day.
The final thing is we will be taking photographs through the day. If you don’t want your photograph taken or used today, please tell us, and we’ll make sure that you get photo shopped out of it, which they do with me all the time.
Hearing Awareness Week is held annually to coincide with World Hearing Week. The objective of Hearing Awareness Week, which I got off the website of Deafness Forum, is to raise awareness of on how to prevent deafness and hearing loss and to promote ear and hearing care. We’ve been doing it now for many years, this Hearing Awareness Week function. We’ve had expos in the city, focusing on prevention. We’ve had forums. We did this sort of process last year, which focused on the elderly and how to assist the elderly. Today, as you can see from the promotional material we sent, we wanted to focus on how best to access support for your hearing loss with or without the NDIS support, because some people are eligible for NDIS support and some aren’t.
The NDIS which I have been talking about to David and others before we came in here today, is a major initiative, probably the most major initiative that has happened in disability in the last 30 or 40 years. I think the most major initiative was when disability first got on the map and ministers for disability were appointed. In fact, the first minister for disability was in Western Australia––Eric Ripper––and, subsequently, that has happened across Australia. Then you had the NDIS, which came across nationally––a major initiative and by and large it has been positive in its objective. But as with all change, you need to understand the implications of that change. There’s been some confusion and misunderstanding about the process and what’s happened. It’s been, in some aspects, hard to access or difficult to understand how to access, which needs explanation, and like all change, there will be some errors in its implementation. We are here today to examine parts of that. But today we want to examine, whatever your hearing loss or no matter what your age, what are your options, where can you look and, when we get to the Q&A later today, what are your experiences and what can we learn out of that process? What can we take on board as the Deafness Council to decision-makers nationally to say this is what you need to improve in the process, remembering that in terms of hearing loss and the way to treat it, one size, of course, does not fit all; everybody differs in the approach you have to take.
To launch the week we are very fortunate to have Professor David Gilchrist, who is here on my right, to do that. Let me read briefly from his CV, which is very impressive. Over a career spanning 30 years, Professor David Gilchrist has held a number of senior roles in the not-for-profit, commercial and public sectors. Most recently he held the role of Assistant Auditor General in Western Australia and prior to that he taught accounting and finance at the London School of Economics–– a hotbed of socialism there, I can tell you! I nearly went there once––and Portsmouth University in the UK, and Curtin University and Edith Cowan University in Australia. David is a chartered accountant––so he must be a good bloke seeing as I was one––holds a PhD in economic history from the University of Notre Dame and is currently director of Baxter Lawley Advisory and professor of accounting at UWA, where he is convener of not-for-profit UWA research group and co-convener of Australian studies. In fact, if you read The West Australian yesterday, it had a very good article about not for profits in WA and the need for government to support them. In his work David has advised a number of Australian governments and authorities, commercial concerns and human services organisations relating to human services governance, sustainability, accountability and strategy, and, most recently, related to the NDIS amongst other things. He recently stepped down as a member of the Australian Charities and Not-for-profit Commission advisory board. Thanks again your time, David. We do appreciate it very much. Please welcome Professor David Gilchrist. [Applause]
DAVID: Thank you very much. First and foremost, if I can get this microphone to not poke me in the eye, I would like to recognise the Whadjuk people of the Noongar nation and to pay my respects to the elders, past present and emerging.
I would also like to say thank you very much for allowing me to speak today. My brief is for 10 minutes, which is probably a cruel and unusual punishment for an academic to speak only for 10 minutes! But hopefully a couple of points that I will be able to raise might be of use to you in terms of thinking your way through the session today. My role in the NDIS, I have recently over the last three or four years been adviser to a number of agencies in relation to the NDIS. I think there are three fundamental issues that we are challenged with. The first one, in no particular order, is in relation to that advice. While I might have given a lot of people advice, I am suggesting that anyone has actually taken that advice. I think this is a big issue for the NDIS particularly, but also a big issue for state and territory governments as they try to transition into the new world. There are two things about it that I think we should talk or think about in the context of a session like today. The first is that the NDIS is not the system; the NDIS is part of the disability services system. It is an important part of the system, but it is not the whole system. There are many organisations, there are many funders, including state and territory governments, local governments and other organisations, that all contribute resources to this very important work. The fundamental problem of suggesting NDIS is the only system, or rather the complete system, is that the NDIS is not talking to enough people about how to do things, about what their priorities should be, and also learning from their mistakes. I’m certainly not one to suggest that the rollout of something like the NDIS is going to be mistake-free. I think when Julia Gillard as Prime Minister launched it, we all expected there would be learnings, things we have done wrong, things we can do better. But I think we all perhaps naively expected through a feedback loop that we learnt from those experiences and applied those experiences to the way we worked going forward.
The NDIS has not traditionally worked with the sector of service providers and it certainly hasn’t worked well with consumer groups in terms of how it should do things better or how it should do things better. And I echo Barry’s comment, too, in relation to people with disability. We know from across the board that there’s not one person with disability that’s exactly the same as the next person. In other words, the idea of a commonwealth agency having a commonwealth program that is set in concrete in terms of how it delivers services I think is fallacious right from the start. I think it has great difficulty if it can’t articulate with states and territories and articulate with the sector. I think one of the big things we need to keep pushing government to do, and particularly the NDIA, the National Disability Insurance Agency, is to talk to people like yourself, talk to peak bodies, but also talk to state and territory governments in terms of how best to roll out the opportunities inherent in the NDIS going forward.
I think the third point I want to raise in that regard––I’m very mindful I have only 10 minutes; I’m speaking very fast to get it all in––is a point I raised yesterday in relation to not-for-profits and charity organisations particularly. My work has very much been around the provision of services in human services. So I have done a lot of work in disability most recently, but aged care, child protection––all of those areas of operation, if you like, or service, that certainly that hotbed of socialism at LSC have supported since their establishment in the early 1900s. But one thing that is important about all that work, is that at the end of the day not only do charity and not-for-profit human services organisations provide great services and have the capacity to understand what is going on at the coalface, they also employ many people, and in fact, in Australia, charities and not-for-profit organisations employ more people than any other employer, save governments. So not only do we need to be thinking about how we might better roll out the NDIS, how we might better provide services to people with disability in aged care, in child protection, but we should also be thinking about this sector as being a very real opportunity to drive the economy and to drive the investment that government makes in order to see the economy strengthened. So when we are in a situation, as we are at the moment, where we’re concerned about the economy, where things like the coronavirus and what have you are potentially impacting the exports and the international relationships we have economically with other countries, this is a sector where further investment would result in great outcomes for government economically as well as great outcomes for people with disability and people with other needs in our community. In other words, we can build the economy and help people. I think that is certainly well worthwhile thinking about.
Ladies and gentlemen, I’m sure I have used up my 10 minutes. But I wanted to say congratulations on coming together today. Use the time and make sure that what you talk about and what you are thinking is passed on to the appropriate people, so Mark and others, so that’s also pushed up the tree so that the NDIS does find out what people who use services, what the natural supports of those people who use services see as priorities and make sure that people like me and others are learning from that so we move forward. Thanks again for the opportunity. I do appreciate it. Have a great day and I’m sorry I can’t hang around for the full session, but I hope you do very well, and I have certainly made Barry promise me that he’ll brief me at the end of it. Cheers.
[Applause]
MARK: Thank you, David. Good to go? Thank you. Thanks, David. I have known David about eight years now. And he and I have discussed different things around the not-for-profit sector for quite a while. A lot of that does relate to government policy, and David is one of those people who doesn’t just talk about stuff; he actually gets in and does things on behalf of the sector, connects with the sector, connects with government and tries to get a good outcome. So having him here today to launch around the NDIS, and talk about that side of things and what some of the challenges might be, is appreciated. We know you have to run off for a family event, but thanks for today and we look forward to your connection with our sector for many years to come. [Applause]
BARRY: Thanks, David, and good messages. We are now moving to a section where we are going to hear from a group of organisations about the sort of things that they are doing to try to relate to people with a hearing loss and how best you can access those organisations and services. The first of those people is Annette Perrin. Annette comes from Access Plus, previously the WA Deaf Society. Annette has worked with the disability sector for over six years having held various roles as chair of the board at Access Plus, now acting CEO, and has previously been an executive with WA’s largest provider, Activ Foundation, a very large and active organisation. During this time, she has seen firsthand how the introduction of the NDIS has shaped organisations and the service delivery they provide to customers, recognising that the underlying principles of the NDIS bring better customer and commercial outcomes for everyone through choice and control. The adaption has been the hard part. She is keen to be part of finding ways to learn from the challenges we have experienced in implementing the NDIS to continue to improve the outcomes for customers and communities. I think it would be fair to say, Annette––and I do not know this, but I would be surprised if it wasn’t the case––that the advent of the NDIS has led to some significant changes in her organisation, and changes probably for the better. Please welcome Annette Perrin. [Applause]
ANNETTE: Thanks, Barry; and, yes, you are right; lots of changes. Thank you everyone for taking the time out today to come along and have these important conversations. The 10 minutes I’m looking at using here is to focus on what are some of the things that the NDIS has created in terms of new opportunities, particularly for members of our community, being deaf and hard of hearing people. What are some of the things we are doing to respond to that and what are we seeing in terms of the way that our customers now approach us? The last part is: how are we leveraging some of the opportunities, particularly with the grants we are getting from government, around trying to break down some of the barriers and finding that it is, as David said before, not all about the NDIS; it is about creating better opportunities. NDIS is just one source of funding; government grants are another way that we can help continue to improve the experience for all our customers.
Just to start, at Access Plus WA Deaf we have been proudly supporting the deaf and hard of hearing community since 1921, coming up to our centenary next year. We are a profit-for-purpose charity and our core goal is to foster a community of communication without limits. With the introduction of the NDIS, we are seeing some amazing things happen in our community, things like increasing the number of deaf and hard of hearing people entering tertiary studies, which means we are seeing an unprecedented demand for our Auslan interpreters and, unfortunately, we don’t seem to have enough of them. This is not only a concern for WA; but nationally there’s an ever-increasing need for the services Auslan interpreters provide and we need to do something to boost that supply of highly qualified interpreters.
The second amazing thing that we’re seeing at the moment is the increasing number of the deaf and hard of hearing accessing mainstream sports and activities, which means that we have more communication guides and support workers to work alongside our customers to help them reach their goals, and making sure that those facilities are fit for purpose, they are accessible and welcoming and inclusive of all members of our community.
The third point I would like to highlight is the elevated demand for reasonable and necessary supports to achieve aspirational goals, which means the way we support our customers during their NDIS planning meetings, to be clear on the goals they really want to achieve, which maybe they have never even dreamt of before, are now something that we are helping them work together with to make sure that they get the funding that they need.
Access Plus has four core values: community, allowing us to continue to support the deaf and hard of hearing community in this state; access, providing opportunities and developing partnerships with external stakeholders; inclusion, offering services and activities for all people impacted by the communication barriers; and progress, embracing change and seeking opportunities to strengthen our future. It is these values that have helped guide the way we transition our business to adapt to the new NDIS world. We are seeing that the way customers are typically coming through and asking for services are three key pathways. The first one: You don’t have an NDIS plan. How can we familiarise you with the NDIS process? What does it mean? What are the sorts of things you could expect? So it is a really new experience for people and they want that help and support to navigate their way through.
The second one is you have an existing plan and maybe you have accessed services with us or other service providers, but you’re looking to renew it. Okay, this is how you would go about a renewal of your NDIS plan or how you might change some of your service provision or the goals you are looking to achieve.
The last one is for those people that, going back to David’s point, NDIS is not the system. Those people who don’t have NDIS plans but are looking for services and supports. It may be a fee-for-service that they are looking for, but how do they go about getting the service, support and quality that they are after? How can we add value, really, to the services that they are looking for?
So we are looking at shifting our services to customers to help plan renewal processes, because we know that that’s increasingly the area that people want the support most around. Many people have gone through their first NDIS planning conversation; now it’s moving into the renewal. One thing we have heard a number of customers have experienced, is that going into that renewal conversation, sometimes they get a decrease in the funding of their plans if they haven’t spent all the money in their previous plan. How do we help and support them if there’s been a change in goal or maybe you didn’t necessarily access the services last year? That does not necessarily mean it is a predictor of the future. So what is it you’re looking to achieve in the next future? How do we support you to articulate that to make sure that your NDIS funding plan is the appropriate amount of funding for you as an individual with unique needs to get the funding you need and deserve?
We get a lot of feedback from customers saying that the support we offer in that space is really, really helpful and they often get a better outcome in their NDIS funding plans and conversations themselves because of that support in making sure they are really clear and articulate on the goals they want, the services and supports that are reasonable and necessary to achieve them, and to almost disconnect between what may have been the past goal and what is their future goal. As all of us, we always continue to change the goals and support that we need and there’s no difference in going into an NDIS funding conversation. That is one thing we hear from our customers: they appreciate that support in advance.
The last thing I will touch on here: with the introduction of the NDIS, there’s been a real commitment by government to help remove barriers, and while NDIS is a funding stream for the individuals, the grants as well that are coming to help make sure people can access the services and supports they want has been refreshing. Three grants that we have got, which I’m proud to say are helping remove the barriers and create more opportunities for people living with disability, first one being our master class program, which finished last month. We had a number of staff graduate from an Auslan interpreting program––or were able to sit accreditation which is going to help bolster the number of qualified interpreters that we have available to support deaf and hard-of-hearing members in the community. That was a fantastic way to invest in building the capability that we need when we know there is a shortage of highly qualified interpreters. That was a fantastic one.
The other one is a “hidden gems” program, which nurtures entrepreneurship in the deaf and hard-of-hearing community. We have had our first cohort go through and graduate and we are just about to start our second round of deaf and hard of hearing going through that adult learning program to help bring their business opportunities into reality and create the pathways, create the commercial knowledge, understanding and skills to be able bring those businesses to life.
The last grant, which has been a brilliant way to break down barriers particularly in mainstream, is that “they did what” program. We profile our highly qualified deaf and hard-of-hearing members across all of Australia on what their achievements are, showcasing their abilities to contribute equally as members to the economy and community in everything they achieve.
The NDIS rollout is continuing and we like every other service provider are doing our best to make sure that we adapt to that to make sure it is a continuation of highly qualified, quality services to our community. There’s always room for improvement and it’s only by working closely with our community that we are able to achieve our goal of fostering a community of communication without limits, which is why these days are so important for us to hear what people are looking for. Thank you for your time and I look forward to hearing what happens next. [Applause]
BARRY: Very good. I need my bit of paper. Thanks, Annette. Two comments about that: Of course, the theme that David started off with, that you indicated, and also we said in our theme today––it is not just the NDIS. The NDIS is not just the answer for everybody because some people can’t access the NDIS but will still need support. The second thing which is so refreshing to hear you say, Annette, is that the NDIS and some of the packages has led to a great increase in deaf and hard-of-hearing people taking in tertiary studies. When you’re as old as I am––and Sarah, I keep referring to Sarah here who has been involved with this organisation for a long time. In the early 90s, I went to every tertiary institution in this state to talk to them about helping deaf and hard-of-hearing people access tertiary studies. There was one part-time equity office at Murdoch University––one; part time! Of course, kids just didn’t get there. Now, of course, every institution, whether it’s the TAFE, or Curtin University, UWA––they have got an office full of people helping them get there. It’s just fantastic the opportunities these kids have got and the NDIS is just making it even better. It’s like I used to say when I was involved with the Disability Services Commission. Disability is a great field and you keep making steps of progress, but every time you make a step up the ladder, you can see how much further we have got to go. We still have a long way to go. Thank you, Annette.
The next contributor is a lady called Blanche Coyle. Blanche was a high school English teacher for eight years, working across both the private and public system. She then transitioned from education to audiometry and worked as a clinician in the private sector before moving to Australia in 2011. In 2015, she moved into management and manages three Australian Hearing centres in Geraldton, Karrinyup and Rockingham, and looks after visiting sites from Carnarvon to Esperance. This year Blanche has taken on the responsibility to oversee all the outreach work Hearing Australia does in Western Australia. She’s busy working with other agencies in an effort to build awareness and reduce the impact of otitis media in Aboriginal communities. She is a senior executive with Hearing Australia. Two other important things. Last year she did the London Marathon––was it? In 2014 she ran the London Marathon and raised $10 000 for PMH in the process. Just as importantly, happy birthday for yesterday. Please welcome Blanche Coyle. [Applause]
BLANCHE: Now that I have a been embarrassed––I was already nervous, so thanks for being patient with me. I would sincerely like to thank the Deafness Council and Barry for the opportunity to speak on behalf of Hearing Australia. I hope that we reach our collective goal not just today but every day, in being able to assist people to access support for hearing loss. For over 70 years, Hearing Australia has provided world-leading research and hearing services for the wellbeing of all Australians. We are a statutory authority and the nation’s largest provider of government-funded hearing services and we also care for clients who may not qualify for these hearing services. Hearing Australia agrees and believes that every deaf or hard-of-hearing child or adult has the right to communicate effectively and that there are many paths to achieving this goal. Our protocols and services to children require our audiologists to provide families with information about the range of early intervention, options that are able to support their children, and information about all available communication options, including Auslan. Our approach to supporting children and families is based on international research and best practice guidelines. We work with health services, schools, aged-care facilities, and strong community connections are essential.
Hearing Australia has delivered the community service obligation, or the CSO, program on behalf of the government for over two decades. In the last year we have helped over 33 000 children and young adults, and some 27 000 adults with complex needs, and in addition we have delivered 11 000 services to Aboriginal and Torres Strait Islander clients. At this stage, work is underway with the government to map out the future of our CSO program and how it’s linked to the rollout of the NDIS. Hearing Australia is providing input to ensure that our existing and future clients receive the best possible and ongoing care and services. However, I do concede that advising people about their future options is a hard task at the moment. With July 2020 fast approaching and details yet to be confirmed, I honestly have to admit that we cannot clearly advise our clients on the future or the support of pathways. As a branch manager I can testify that we are regularly being contacted by parents and clients who are unsure about what to include in their plans and how to access support offered in their plans. I assure you we’re doing our best to help them navigate their way through these murky waters. I can offer comfort that no-one has lost eligibility to our services or products that we currently offer under the CSO program and, indeed, many people have received additional support by accessing NDIS funding on top of what we had as a CSO program.
For people aged over 26 and under 65 with an eligible hearing loss, NDIS offers support that we were not able to previously help with. This is pleasing. I’m also rapt that NDIS have their own representative here today and, hence, I’ll be leaving it to them to speak on behalf of their program. I will offer the assurance that we’re continuing to support our clients who need our support under the CSO program, as we have done for nearly 30 years.
I would like to use the remaining time I have got to speak about the federal government announcement of the $30 million program for Happy, which is a hearing awareness program in the early years. It is aimed at Aboriginal and Torres Strait Islander children from birth to school-age entry. While it is fantastic that we are getting kids into university in the tertiary level, it always starts in the children in the early years. Focussing on children in very remote and regional locations, Happy engages with Aboriginal community-controlled health organisations, the Department of Health, early education providers and communities with families.
I am going to speak about a recent experience in Carnarvon, where the community had identified concerns and had reached out to SSENS, and Mel reached out to me and we went up and spoke with the Western Australian Country Health Service and we looked at how Dr Harvey Coates is going up there four times a year, but in the other months there was a lack in what was going on with the screening and the referral pathway for these children. It was just such a lovely example of how we all ended up around a table and working together. We spoke to the community district school. We spoke to community as far as the country medical service went. We spoke to Carnarvon Aboriginal medical service and by the end of the trip we had come to a point where every month there will be a screening in process. Those kids who need to go to ENT will do so, but also there’s an interim measure where they’ll come to Hearing Australia and we can look at some intervention in the meantime. We know this problem is wicked; it is not going to be solved overnight, and sometimes what we can do to mitigate services is just as important as curing it. The school has come on board. We’ve looked at Soundfield System and how to get some philanthropic funding to help with this. They are also going to use the Sound Scouts, to help always test children’s hearing beyond, which is an easy app that can diagnose whether it is conductive or sensorineural. They are going to work with a breathe, cough, blow. And the point I raise is sometimes things are a matter of all of us being able to work together. Noah is a hearing software program where all hearing aid manufacturers load their software in so hearing aids can be programmed. I am sure the biblical reference to Noah’s Ark has not been lost on you. They are all in the same boat and the parallel seems apparent to me. I think it’s great to have a forum like this so we can all grow in the same direction and I hope we can continue to work together. [Applause]
BARRY: Thanks, Blanche. A couple of important messages in that. I was sitting there, thinking, and listening to Blanche, and she relates about Hearing Australia, or as it used to be Australian Hearing and the importance of early intervention. It reminded me of––I will cry in a minute––of going to Australian Hearing with my son, who was 10 or 11 months old, before we ended up with the speech and hearing centre and sitting in the sound booth and being told for the first time that he would have a profound hearing loss. A fantastic organisation, Hearing Australia, and I hope that in terms of all that has happened with the NDIS we don’t lose all that expertise in those early intervention years,. But what is happening in that field is very, very important and we are active, and I know Mark and others are, to ensure that happens. The other thing which was important is remote communities. You have heard me say this before, many of you. I was on a national committee giving the government advice on hearing issues, and we were Victoria, in Melbourne, at a meeting and they were talking about remote communities––in Victoria. I couldn’t believe there was a remote community in Victoria, but there are apparently!But when you have people talking about remote communities in Victoria and then you go to places like Harvey and Paul and others do, in Western Australia, the need to provide services in those areas, and how the NDIS meets the challenge in providing services in those areas, of course is a key issue that we need to grapple with as we go forward.
Enough from me. Lize Coetzee from the Ear Science Institute holds a Bachelor of Science from UWA and completed her masters of clinical audiology in 2010, winning the clinical prize for the cohort. She has a passion for client outcomes and patient-centred care, which she has applied to her work as an audiologist at the Lions Hearing clinic and in her role as head of clinical services. In her managerial role she embraces new technologies to improve service delivery, client outcomes and efficiencies, and has been a resident in Australia from the land over in the west––isn’t it?––Africa, since 2001. Please welcome Lize Coetzee. [Applause]
LIZE: Thank you so much, Barry, and thank you so much for having me today. Really, let’s talk hearing. What I’m going to talk about today is who we are, a little about our services and how you can access those services. We are Ear Science Institute Australia. Our vision is to be a centre of excellence, enhancing people’s lives living with ear and hearing disorders. The way we do that is through education, research and our clinical service delivery. So there’s not one aspect to the institute, but all these components working together to improve people’s lives with ear and hearing disorders.
Within the clinical services our mission, our purpose, why we do what we do, is to improve the quality of life of people with hearing loss, and we do that by improving their communication. Our clinical services are separated into two, essentially, departments: Our Lions Hearing clinic and our Ear Science clinic. Within Lions Hearing clinic we have the adult hearing services or what we call adult rehabilitation using hearing aids or assistive listening devices. We also offer services to children, tinnitus services, so for people who have ringing in their ears. And with the Ear Science clinic what we concentrate on is our implantable services or devices, as well as balance services.
Just to point out a couple of our achievements over the last few years. We have 14 clinics across Western Australia. One of the nice ones I wanted to point out to you today was the Ear Science Institute is now a World Health Organization collaborating centre. There are only six in the world and we are the only one in Australia. That’s very exciting for us as a community to know that we have got this centre within WA really trying to enhance the awareness of hearing. We look forward to working with all of you to achieve our mission there.
Our clinical approach within the institute is it’s a client-centred approach. We really try to individualise the care we provide to every client. We are a not-for-profit organisation––how I really like to refer to it is profit-for-purpose. What happens in the clinics is all reinvested into the research, both clinical research as well as our basic research. All our clinical processes are always evidence-based, and that’s, you know, working with the research department. The things that are generated within our research department are flowing through into the clinics so we can continually improve the services that we offer.
Clinicians provide services on a needs only basis, so it is not a generic service; we identify what the needs are, and also provide, as you’ll see in a second, lots of different hearing devices but also from across all of the manufacturers, which is really important, which allows us to provide the products that are really needed.
We haven’t talked about the prevalence of hearing loss so much, but one in six people have a hearing loss, and when we look at people over 65 it’s actually one in two. It’s really so important for people like us to come together and talk about hearing and then go out there and improve the awareness. People are still not aware of this prevalence. So we all need to go out there and talk about it and talk about the importance. Then it takes people seven years to do something about it. Once we have got them convinced that it’s important, they might still take seven years. That is why World Hearing Day is so important. It really puts us on the map. It gives us an avenue to talk about what we do. Last year, the message was “check your hearing”. That’s so fantastic. We need to check our hearing. We need to see where the hearing is at. But I love this message this year, is actually the timely and effective intervention, because checking your hearing is not going to actually give you the improvement that intervention can give you. And the intervention is not limited to hearing aids or cochlear implants; it’s communication strategies, it’s Auslan. I love the image. It really shows the breadth of intervention that’s available.
Our services––I’m just really speaking at a sort of very high level about all the services. But we’ve got hearing screening, and that is what I said before––world hearing message last year––talking about check your hearing. Hearing screening is really that first step to identify: is there hearing loss or is there not? Where a hearing assessment or diagnostic hearing test is able to tell you what your hearing levels are, as well as how well are you able to actually understand speech. Then we have got our hearing solutions. That really is across all the different types of solutions that we’ll talk about in a second.
So given that we have already said that it takes people, on average, seven years to do something about their hearing, we really need to increase that awareness, and something that we do at the institute is making more opportunities available for hearing screening for people to get that awareness that there might be a hearing loss, so both in the form of a questionnaire or we have the kiosks in the community where people can start interacting with the concept of hearing. But it’s only with a full comprehensive hearing test where we understand what your needs are, what your ability is to understand speech, that we can really recommend the hearing solution that’s right for you. At the institute we are not limited to just hearing aids, or just cochlear implants. We really like to provide the breadth of interventions that are available. Communication strategies form a very integral part of what we do, because it’s not just the person with the hearing loss, but it’s their significant others who need to understand communication strategies to better communicate with people with hearing loss.
Some hearing loss is medically treatable. That is why it is so important to come in for a full diagnostic hearing test with an audiologist or audiometrist so we can understand, because there might be something that can treat the hearing loss––assistive listening devices, hearing aids and cochlear implants or other implants.
I’m sure everybody is aware of communication strategies, just a couple: speak clearly; remove the background noise; don’t cover your mouth when you speak to somebody with hearing loss, because there’s a lot of visual information that we get.
Hearing aids––at Lions Hearing clinic we offer the full range, right from Lyric which is a little device inserted right deep into the ear canal right through to the behind-the-ear technology. It goes across the whole range. But for some people hearing aids are not suitable anymore or are not suitable at all. So when might a hearing implant be suitable? It might be when people’s hearing is continually deteriorating over the years. When you have hearing aids that are optimally functioning, but you are missing that clarity in speech or your hearing aids are fitted and you still can’t hear on the phone; or for some people they just can’t have a hearing aid in their ears due to the anatomy of their ear or maybe infections or a condition of the ear where other devices might be needed.
In the hearing implant solutions, we’ve got bone conduction devices, cochlear implants and middle ear implants. There are lots of different options, so it’s important to see an audiologist and see which one is suitable for you. It is so important to remember assistive listening devices––there are so many devices that can help you in those specific situations where you need maybe additional help currently with your hearing devices or you don’t need hearing devices but are still having some difficulty, maybe, listening to the TV.
Funding options––it’s so good to hear today the NDIS forms part of all those funding options that are available, and it’s important to understand what they are, and contacting the Lions Hearing clinic we can really identify which you can access. We have our hearing services program, which Blanche already mentioned today. We have Medicare, NDIS and then private health insurance also do provide some funding for hearing services.
Hearing services program–– so hearing screenings are completely complementary, and then with a hearing assessment, for people who don’t have an any funding, it’s $100. But with Hearing Services program, that appointment of a full comprehensive assessment is completely subsidised by the government program. Hearing devices are either fully subsidised or partially subsidised, but that depends on your individual needs.
Medicare––so there is some funding available through Medicare for the hearing assessment, either if you’re referred by an ear, nose and throat specialist or neurologist, or if you’re on a chronic disease management plan. That is something you can discuss with your doctor or ENT, but there is a little bit of a rebate available there.
NDIS––we are a registered NDIS provider, which means we can provide services if you are agency managed or if you’re managing your own plan. What we can make available is an appointment where you can bring your planner in to work through what your needs are. If the planner needs help to write up their plan, we’ve been asked do that by a planner in the past, so we can make that available.
Private health insurance generally doesn’t provide anything for the assessment, but do ask. And for your hearing devices, most of them provide sort of a nominal amount towards hearing devices for hearing aids, but cochlear implants, in most cases, private health insurance covers the full cost of the surgery and the device, which is pretty amazing. There are many clinics available from Joondalup right down to Bunbury, and thank you so much for listening. [Applause]
BARRY: Thanks, Lize. It’s great that we have an organisation like the Ear Science Institute that is now world class here in Western Australia, and, as we’ve said all through this morning, but it’s been reinforced by Lize––that is, there’s a need to have timely and effective intervention, but there’s not just one. There are a range of options so make sure you look at what those options are.
We have now got Maddy––is that how you like to pronounce it. Maddy Brennan representing Audiology Australia. Maddison holds a Bachelor of Science from the UWA and completed her Masters of Clinical Audiology in 2015, graduating with distinction. She is a senior audiologist at the Ear Science Institute, working in the fields of adult rehabilitation and diagnostic vestibular evaluation. She also volunteers her time in the wider audiology community and is current secretary for the WA chapter of Audiology Australia. Please welcome, Maddy Brennan. [Applause]
MADDISON: Good morning, everyone, and thank you for having me today. Today I will be speaking to you about Audiology Australia and a little bit about who we are, but also how that generally relates to the NDIS. Audiology Australia is a not-for-profit organisation. It’s a professional member association, rather, and it’s the leading professional body for audiologists, representing over 2 500 clinicians nationwide. The role of Audiology Australia is to provide education, so for continuing professional development and upskilling for audiologist. It also provides representation and advocacy. So for the government, at a government level, as well as the wider Australian public. So, really, talking about why we need audiology and the importance of hearing health care.
It also is responsible for establishing guidelines for standard of care and a strict code of practice. That’s been developed to ensure there is a consistent and equal––sorry––consistent and equal sort of health care availability. In Australia, audiology is not a registered profession, so anyone can call themselves an audiologist, anyone can sell a hearing aid. That makes it really hard for a consumer. How do you know where to go? What can you do? In response to that, Audiology Australia has come up with the Audiology Australia accredit audiologist trademark, and this trademark is exclusively available and restricted to audiologists within Audiology Australia. When you see this trademark, which is the image you see on the screen, you know you are with a trusted professional who has to abide by certain professional standards who has to follow on certain training programs and things like that. On the website there is a search function where you can check if your clinician is an accredited audiologist, and they’re also working on establishing a find my audiologist so to be able to find local audiologists in your area who are accredited.
You’re hearing a lot from audiologists today, but who actually are we? We work with clients to preserve, manage and improve hearing. We improve their ability to process and understand sound and also to balance. Audiologists help people right from newborns all the way up to older adults and work across a range of different scopes of practice. That can be educational audiology, clinical audiology, even some business aspects as well. In terms of the NDIS and that sort of services you would be accessing, there are two main types, so diagnostics, which would be the testing, hearing testing, speech testing, auditory processing, even balance testing; and then you have your rehabilitation. That would be any intervention or therapy to help minimise that perceived disability. As Lize mentioned, it’s more than just hearing aids. It could be wireless communication strategies, remote sensing systems, ALDs or even implantable technology. That is something really important to think about in terms of planning for your NDIS plan and application, is maybe it’s not hearing aids; maybe it’s smoke alarms so you’re able to hear at night without your hearing aids in. Maybe it is a doorbell to have that extra support. You are not limited to hearing aids; there is, you know, a big range of services.
In terms of audiology and the NDIS, so those who are eligible, there is obviously the application process and things like that, which we have heard a bit about today. But as Blanche mentioned, it is not affecting the hearing services program so if you’re eligible for that, you would still be covered. Because the NDIS isn’t applying to age acquired hearing loss, that would be still something that is covered through the hearing services program and again the community service obligation, so for children and people who need extra support.
Another aspect––I know today it’s more about hearing focus, but audiologist, it’s not necessarily that hearing domain that they might support with the NDIS––something like balance assessment might be a valuable tool to help provide supplementary evidence for NDIS application; for example, maybe someone with a vision impairment, that’s affecting their mobility and their ability maybe to balance. So a balance assessment, to check; “Well, my eyes are aren’t doing what they’re supposed to do, what are my ears doing?” If they’re not working efficiently, that might mean “Do I need physiotherapy or extra aids and things like that?”
In terms of evidence for eligibility, it is obviously the audiogram to have that proof of hearing loss, but also documentation of the functional impact. So how is it affecting the ability to communicate, to socialise and engage with your community? Are you able to go to the bank and speak to the teller over the counter? Are you able to phone your doctor and make an appointment? All those things. Two people might have the same hearing loss but they have vastly different needs in terms of communication. So that’s part of the process and thinking, and I think Annette mentioned the power of preparation. So the general consensus amongst audiologists, test first, let’s think about funding after that. So without knowing your needs, what your hearing loss is, and really having that conversation about what is it that you need, it’s really hard to go in empowered and to advocate for yourself because it is such a complex system to navigate. So you are really reliant on educating yourself and making that available, which I do think is probably one of the criticisms of the system, is if you’re not capable of for whatever reason, if you can’t go in and vouch for yourself, it is really hard, which I think there are some really great organisations out there to help you bridge that gap and get there. But it is probably an area for improvement with the NDIS.
Another thing is ensure your audiologists are transparent. Okay, you might get funding for hearing aids. What happens if they need a repair outside of the warrant period? Who pays for that repair? What happens if you need a hearing test in 12 months’ time? Is that covered under your plan? What about batteries? What happens if you go travelling and lose it? Do you need insurance? Do you need home and contents insurance? That is what you need to think about in that preparation process and making sure that you are ready for whatever gets thrown at you.
The other aspect is most audiologists don’t offer a retail service, so to be able to go and say can I please have this smoke alarm and be sold it over the counter, a lot of time you will need an appointment. I think that is probably a good thing. It comes from a good place to make sure that what you are getting is what you need. Just because maybe your friend got a certain device, it’s not always going to be suitable for you. That’s why it’s important for you to have that conversation with whoever it is and to make sure that you are prepared.
The other aspect is, it’s support for daily living, the NDIS, but there are still other support services out there, like Job Access or universities where you have the interpreter services and things like that, so it is not the be all and end of hearing, and as Lize went through there are different options out there.
In terms of Audiology Australia itself, we are involved in advocating to government about the NDIS. We are founding members of the Hearing Health Sector Alliance. This was established last year to provide a unified voice from key representatives, so places like the National Acoustics Laboratory and Ear Science, so there really is a force going to government from hearing health care because it is a small industry, compared with physiotherapy or occupational therapy. Audiology is really small. That is really important, and it’s been mentioned today about how important it is to band together and go together to Parliament to really make sure that we’re listened to and that these important and vital services are considered.
The other aspect is Audiology Australia––if you are having difficulty accessing services, you can contact them and they can help either facilitate for you or engage you with providers who might be able to help. They also do have an independent complaints process. So, for whatever reason––and hopefully you don’t need it–– you are able to go to Audiology Australia and submit complaints.
A side note for providers, a little reminder, is to register with the NDIS quality and safeguard commission by 1 July to make sure that of that transition. Thank you for listening. As you can tell, it’s my first time, so I was very nervous, but thank you for being patient with me. [Applause]
BARRY: Thanks, Maddy. If that was your first time, your next time is going to be outstanding! You were very, very good. Thank you. Some important messages that Maddy gave us, and that, is, which we haven’t heard today, there are a range of options, not just hearing aids in terms of the NDIS. You can get the smoke alarms et cetera, so it’s not just hearing aids that you may be approaching the NDIS for. Also, of course,two other key points I think Maddy made: Test first then determine what your needs are, and latterly, of course, I’m fully supportive of your organisation’s participation in the Hearing Health Sector Alliance. The only way we are going to achieve results in terms of these issues, as Blanche mentioned in the regions, is to work together. The more we work together, the better the outcomes. Well done to your organisation for doing that.
Let’s go to the NDIA. Sonya Howard is an engagement officer with the community and management and mainstream engagement team at the NDIS. I haven’t had the pleasure of meeting Sonya yet. Where are you? I should have come and seen your earlier. The NDIA and people like Sonya have a big job ahead of them in implementing this major change, but please welcome her so we can hear what she has to say. [Applause]
SONYA: Hi, everyone. Good morning. My name is Sonya. I’m from the NDIS and I will give you’ve a bit of 101 overview of what the NDIS is. I would like to second the acknowledgment already given to acknowledge the traditional owners on the land on which we meet today, the Whadjuk people of the Noongar nation.
A general overview of the NDIS––basically it is Australia’s first national scheme so assist people with a significant and permanent disability to be able to live an ordinary life. The NDIS gives insurance that if you or your loved one or someone you know is born with or acquires a significant and permanent disability, that they are going to get the supports and services that they need to be able to contribute economically, socially, just the same as everyone else. It’s based on a lifetime insurance approach that you’ve got investment throughout the lifetime, support throughout the lifetime, to give better outcomes later in life. As already discussed, the NDIS is in addition to what’s already there. So we’re not there to do something that people are already doing. You have federal government hearing services programs, you have got great services in the community and providers, so NDIS is in addition, and we’re looking at full scheme about 500 000 Australians that will have support through the NDIS.
The basic principles of NDIS are in the United Nations convention for people with a disability and really that’s about empowering individuals. We come from a long history of block funding. Basically that meant you get what you get and you don’t get upset. So certain organisations got the money and that’s what you had to do. Whereas now the funding goes directly to the individual and they have the choice and control to do what they want with it for their reasonable and necessary supports. That might be the choice over what their goals are, what do they want to do. What kind of assistive technology do you want to use? Not everyone is the same. But also control––what providers do you use? How much do you want to pay? That’s really where that comes from, is empowering individuals, families, loved ones and carers.
To give you an idea of where the NDIS is at the moment, the national scheme, it was state before 2016 when the national rollout started, and WA was the last state to come on board. We started in 2018, and we are expecting to have approximately 50 000 people in Western Australia who are supported through the NDIS. It was 24 000, as of December last year, and approximately 30 000 to 35 000 now. We’re progressing really well. I think a really important thing to note here is that a lot of people are receiving their supports for the first time. I think that’s really exciting for individuals.
Who is rolling out the NDIS and who is helping? You have got the agency––so the NDIA, which is the federal government agency that helps to implement the scheme and where government, governed by legislation, so you have the NDIS act. But in Perth specifically, we have also got partners. Basically these are local area coordinator organisations that help people to access, to develop their plan, and then to utilise their plan as well. So as mentioned before, you know, how to access the right supports. We have got APM and Mission Australia for adults; and then for early childhood, early education is important as well, is Wanslea, so they are specifically for children aged zero to seven years.
Talking about who is eligible for the NDIS. Again, it’s under 65 because we have things like the Department of Health, federal government, that do other services as well. You have to be a citizen or permanent resident or have a special visa; meet the NDIS disability criteria. Obviously, that is quite broad saying that, but it means a significant and permanent disability, and so you have got someone who has a functional impairment that affects their day-to-day life significantly, or they might meet early intervention requirements. So generally this refers to children zero to seven years old, and if there’s proof that early intervention of service is going to reduce negative impacts on functional outcomes later in life.
That is the basics, really; it’s accessing the NDIS. If you think you meet that, your first step is to contact those partners’ local area coordinators that I mentioned before; that is, APM, Mission Australia and Wanslea. Look, there are exceptions to that, particularly in WA, when you’re in very rural and remote areas, the agency will do that where the partners aren’t available. What the partners do, again, you may not be eligible, as well as significant and permanent disability. Those who are not eligible, they are still able to access their partner local area coordinators who can help them access and connect to the appropriate services.
If in doubt, you can always give the NDIS a call. We have a 1800 number and the website has some interesting information for hearing impairments as well. Say, you’re under 65 and meet the disability eligibility criteria and go into your plan. What we look at here in the first stage again is going back to the individual. So it’s based on what a person’s goals and aspirations are. People might want to do different things. They have different goals; require different assistive technology maybe, so core technology to help them live day to day. That might be capacity building in terms of their language, and then there’s also some capital supports for people’s homes that NDIS offer. Again NDIS looks at what’s already being provided––Department of Health, state government, community organisations––and basically works in collaboration with that. Then you have got the NDIS, what we consider reasonable and necessary. That’s what we look in the planning process.
Again, looking at what NDIS funds. You have got your core supports, which might include assistive technology. You have got your home modifications, that might be some capital; and therapies for day to day and capacity as well, whether that’s education or comes down to the individual. I think it’s very important to note what the NDIS doesn’t fund. So those things that may not be reasonable and necessary to live an ordinary day-to-day life and contribute socially and economically to a normal level, and day-to-day supports––so maybe food, water and your rent, and supports that are provided by other services.
Particularly access for hearing––I think we’ve already gone over a lot of this information, that really it could be a lot of options from education, language, maybe looking at assistive technology. And that’s different for different people, so again in the planning process, that’s where those kind of things would be determined. But you can literally google NDIS hearing and some great information comes up. If you require any more information, we’re going to be here later do a Q&A. You can always give the 1800 number a call or refer to the website or our partners. Thanks very much. [Applause]
BARRY: Thanks, Sonya. The point that Sonya made is that the objective of the NDIS is empowering individuals for choice and control. Again you heard earlier from a couple of other speakers that clearly in terms of making that choice and control you must make sure that you’re accessing the services and getting good advice on how to make that choice and control, because not everybody has an ability to make that judgment without the support and advice they can receive.
Can I now come to Mark Fitzpatrick. Mark is our final contributor in this section. Mark is the CEO of Telethon Speech and Hearing, has been since February 2017. Mark possesses over 15 years’ experience in a range of general management and human resources roles and a range of not-for-profit education and government organisations. He also holds a robust history of success in leadership and advocacy for the not-for-profit sector and his most recent role being CEO of St Vincent De Paul Society in Western Australia. Prior to this Mark led a Catholic age and community services organisation, Southern Cross Care, for five years. He’s also active in his local community and in 2017 helped establish the Belmont Redcliffe Football Academy and for his sins he is a tragic Carlton Football Club supporter. I think his tragedy is going to continue this year as well. Welcome, Mark. [Applause]
MARK: Barry, I think I have to agree with you: you’re right, my pain for following the Blues is going to continue for a few years to come, but we’ll see. Hopefully next year I’ll have some bragging rights. I would like to join the people who have acknowledged the country on which we stand and pay my respects to the Whadjuk people of the Noongar nation. I think it’s really important in the work that so many of us do in this room to support Aboriginal and Torres Strait Islander people in terms of their ear health that we take very opportunity we can to do that.
I would also like to acknowledge the work––I know it’s not the end of the session––but the work that people like Barry and Julie do in putting on this session today. It gives us a forum to do that. We underplay how much time that goes into setting up a session like this. Barry mentioned how lucky we are to have Lotterywest, but I think we are lucky to have somebody like Barry MacKinnon supporting our organisations to have a better impact into the community.
In terms of my talk I’m going to take a slightly different approach. I’m going to talk about Telethon Speech and Hearing as part of an ecosystem. I will go through the work we do, and that we get speech outcomes that are better for children with a hearing loss than in the normal population, for example, or the fact that they graduate from high school at a higher rate than the normal population or go to university at a higher rate than the normal population. It would be remiss of me not to do that. But it is really important to have a look at the role that we play as part of the many service that people did access. One person that can do that a hell of a lot better than me, is a young man who is aged six. His name is Eamon Doak. He can talk about this a lot better than I can.
[Video plays]
[Applause]
MARK: Eamon is a six-year-old boy who we took to Canberra last year to do the Power of Speech nationally at Parliament House. He did that without any notes on the day because he had done it before, obviously, and you’ll hear from his mum later today. That journey that they’re going on as a family is something that we have been very, very lucky at TSH to be part of. The way that our staff actually embrace those challenges that many of our different families face is something that I think we as a community can also be very proud of, but it also goes to the point that we don’t support people necessarily with just one issue. There are a multitude of things we need to have a look at. Before I get on to that side of things, let me quickly talk to you about TSH. Telethon Speech and Hearing was established in 1966. It was the Speech and Hearing Centre then. It is important to pay homage to the families, there were about six, critically involved in setting up an organisation because they were unhappy with the way the education system had supported their kids. That family focus is really important to us because it drives everything we do.
Today, we are a lot more than a school, even though that’s a core part of what we do. We have a range of different programs, which I’ll go on to in a minute, but they are multi-faceted and multi-disciplinary and integrated in terms of the planning that we do with the families around their speech and language needs as well as those supports for children with a hearing loss who are deaf or hard of hearing. We do this based in Wembley, but we support communities throughout the Pilbara, wheatbelt, Perth, we have a clinic in Cockburn–– so many locations, and also the advent of teletherapy gives us some reach wherever we are, as far away––Dubai, I think we have had a family that we support.
The key thing for us is we also make sure that we have that multidisciplinary focus. We have teachers of the deaf, education assistants, occupational therapist, speech therapists, auditory-verbal therapists, psychologists and audiologist all supporting these kids. The services that we provide under the NDIS––I got told I have to slow down my speech before, so I will try, as I go along––the key one I think in terms of today’s conversation is the work that we do for children in that early intervention space so that 0 to 6, 0 to four predominantly, and then we have a school-based program that we work, which is the envy of the country in how we work, in Independent and Catholic schools. We provide speech and language programs for children, again from the early years from two onwards––two to six is the major cohort that we focus on there, but we provide services in the schooling program as well up to the ages of eight. Then we have a whole range of clinics. You can access our services from a whole range of different areas.
What I wanted to focus on today is in terms of our role in the ecosystem. I’ve been in this sector for only three years. I wish I had a dollar for every time that someone said: this is the way it should be for all children to have access to this process or that process or whatever the case may be. I think the NDIS is one of those areas where we’ve tried to overlay one constant theme for every single person. I don’t think in human history that’s ever worked. In fact, I think the research in terms of providing those options is really contradictory. We hear a lot of talk about bi-modalism. Some research says that bi-modalism for some kids is really good and others say it doesn’t have an impact in terms of the language outcomes. What we need to focus on is not necessarily that, but what does the family want. At the end of the day my utopia is to go and play golf, which means we don’t have a job because we have solved the problem and it is not about us. We’ve created a community where we are not needed, because we’re part of an ecosystem and that is the way we have designed our services and supports. And that is where TSH fits. We sit in a position where it’s about the families and what they need comes before anything else. We recognise that we have some skills––I’m joined today by three of my colleagues who are absolutely brilliant and lead 110 people across our organisation who are some of the best people you can meet in terms of what we do. But we don’t do everything for all people. We need to connect up the services we provide and make sure that that meets the needs of the families, because at the end of the day that is why we are there.
Importantly, our role is not to deliver everything, as I said, but it’s also that connection piece. I don’t think there’s a family that comes to Telethon Speech and Hearing where we are the only provider; and, if it is, it might be in only a very small number. Most of the families we support have multiple needs, need other services, and our role, if we are doing it properly, even though we don’t get paid for, is to make sure we connect them up and make sure their lives are better by connecting with us in the first place. We have so many families who come to us absolutely shattered. I think that’s the only way to describe their journey so far. Ninety-five per cent of the families that have a child with a hearing loss never expected to be in that situation. They come to us going, “What have I done wrong? What could I have done differently? And what do I do now?” It is one of the things that Terry Crommelin, who was one of our founders, thought of when his daughter was deaf in the 1950s. It is the same today.
What role do we play in supporting them? Everything we do is around parent choice. We run a listening and spoken language service and unashamedly do that. We teach deaf children how to speak and we’re bloody good at it, and I’m proud to say we’re bloody good at it. Bronwyn, who is sitting in the back there, Eamon’s mum, I’m sure she says we are bloody good at it. Ninety-eight per cent of our families say that their child is better off from accessing our services and satisfied with the services we give. Everything we do doesn’t just focus on that child; it focuses on the family unit. We know if we deliver, if there’s a strong family cohesion, then the service supports for that child are going to be better. It’s really simple. We see it in all parts of system design for children across the board. We have a look at that family, take their needs and make sure we can deliver our part in supporting that family. Often there’s a lot of that psychosocial support as well as the specialist services that AVTs and speechies and audiologists provide.
The one thing we do really, really well and as part of the First Voice network, we also make sure that we compare notes, is look at our outcomes. We don’t just provide services; we actually make sure we can measure what we do; make sure we look at it from a parent’s perspective, a child’s perspective and use industry standard assessment tools to make sure we are delivering an outcome for that family, and continue to refine and change our processes so as someone’s journey goes along with us, that they are getting the best possible outcomes. As I said before, everything we do that focuses on listening and spoken language, but for some we recognise that that’s not it. It’s not all that we need to do. So our role now is to make sure that we create not an island but an ecosystem and how do we have that ecosystem that works really, really well, that there’s that trust that we can provide not just in our services but if we work with others to get that outcome, then that journey for those families is so much better. I think that’s what the intent in part with the NDIS was trying to do. You create those services, you can opt for many; but the problem is that it often doesn’t really work. I think what we’re finding is that competitive nature of we’ve got these plans and dollars and we’ve got to work within it doesn’t always create that ecosystem. I think we as a sector, we have got a great opportunity, given how small we are, to actually rise above that.
The key part of the NDIS, which is really hard for our parents, is it focuses on a deficit model. I don’t know about you, but with my kids––I’m sure that when I had an accident and lost my hearing in my right hearing, I am sure my parents didn’t go, “Mark can’t do this”; or I say with my kids, “Caleb can do this or Gabby can do that”––it is always the positive side of things. But the NDIS focuses on the negative to start with. We have to change that. How do we work through that? How do we make sure that when you’re sitting as a parent, when you never wanted to come to Telethon Speech and Hearing or any other disability provider ever, that you’re not sitting there thinking, “Oh my god!” That’s where we start.
The difficulty we have is that there’s lots of information that sits out there. There are 510 speechies in Perth, or thereabouts. How do I know which one will work with for my child? So there’s very little in terms of information that guides people to access the services they want or need based on what they want or need or those aspirations they have for their children. I will talk in a minute about the work we’re doing to try to address that. The key thing about this is that we also have no multi-agency support. In WA, we don’t even have a specialist in hearing in the NDIA who is based in Perth. We don’t have someone who is a specialist in hearing working with a specialist in cerebral palsy, for example, in developing a plan to meet some needs. So how do we as a sector fill that void is a key challenge for us. The difficulty is when you have multiple disabilities, the NDIS doesn’t fund us very well. It’s not like it’s layered. I wish it was. It would be so much easier to say this is what we can give and how do we support that, remembering that most of these children we have, will come to us and hearing loss is one of the first things that’s diagnosed because it’s done from birth because we have the best system in the world.
We have actually had, unfortunately, planners who don’t understand hearing loss as part of the system, and that statement is a statement that was made, the one on the screen, by a planner around “I have seen this baby and I don’t see a disability.” I think our parents don’t see a disability, but when it comes to the funding component part of that, we need to be part of the education of the planners who aren’t specialist in this area. We do know, and in talking with the minister in Canberra last week, he’s very aware that if you are a strong, well-resourced person who has had experience in advocating for yourself or understand how to work the system or know where to go to, then that’s okay. But if you’re not, particularly in low socioeconomic backgrounds, Aboriginal and Torres Strait Islanders traditionally are not good in terms of advocating for these sorts of government systems, so we’re not getting good outcomes for them. And the process is slow. Getting a review on a plan takes about six months. If I was a child with a hearing loss or a parent with a child with a hearing loss, six months is way, way too long.
How do we make the system better? This is where I think some of the things we can do as a sector needs to stand up and work together. We’ve heard about it with Blanche talking and Barry, and David talking to set the scene earlier on, we need to look at how we advocate for all. I mean everyone in the sector. It may not be something that Telethon Speech and Hearing can do, but if we understand the need for the community, let’s go and do it because we make a better community. I think there is a function for the NDIA to open up the training for their planners for people here in Perth. How do we be part of the solution to train them up to understand hearing loss, what services are offered, what context there is, and how to access those in different ways? There’s none of that. We as a sector are not involved in supporting the people who are supporting the families that we support, which seems a bit odd to me. I think we have a lot more to do.
Then there are a whole range of different projects. Annette mentioned some of the government projects around and we are working with Access Plus and the Foundation for Deaf Children to do a guided pathway website for families with kids with hearing loss. We’re doing stuff with Alex with the footy in a couple of weeks, which he is very excited about. We are having a look at how to advocate nationally for what is in Queensland, which is a pathway from newborn hearing screening all the way through to access to early intervention for all families with children with a hearing loss so they can access a specialist early intervention provider of their choice at the right time. We know that 50 per cent of the children in this country diagnosed with a hearing loss do not access a specialist intervention service by the time they are school-aged that is a travesty given how good we are in doing that.
Open captioning––but I think the other thing for us is in Australia we have the world’s best system for children who have are deaf and hard of hearing. It’s not perfect but it’s the best in the world. We need to make sure that we keep that. The changes around the NDIS, the changes around Hearing Australia––we need to make sure that Hearing Australia’s role is critical in that one pathway to get to a best outcome for everybody. With that said, I will get off my soapbox and thank you for allowing me to speak today. I look forward to talking to you later. Thanks very much. [Applause]
BARRY: Thanks, Mark. When people have passion like that, they should be supporting the Dockers, not Carlton! Really! Some important comments there. One point that was made by Mark and really hasn’t been touched on, and only in part by Mark, really is that TSH has a process and the process is the journey with the families. What people don’t understand, I think, or a lot of people don’t see, is that if you have a child in your household with a disability, it affects the whole family. It doesn’t just affect that particular kid, or the mum or dad; it affects the brother, sisters and cousins and a whole lot of people around them. When you are providing a service or funding a service like the NDIS, it’s more than just the individual who is affected and impacted by that process. Clearly, TSH have that in mind. The second message I think that Mark gave, in terms of any service to a person with a disability, it is a matter of joining up the various services involved. Thirdly, he made the comment that we need to work together to achieve the results in improving the system.
In terms of this morning’s summary, we focussed on the fact that the NDIS is part of the system. It’s not the total system; a very important part, of course, but not the only one. We need to be aware that there are plenty of options available when you are looking at services for people who are hearing impaired, not just aids; there are plenty of other services. The focus of the NDIS being on choice and control, but again the point Mark made is how to ensure that the people making that choice are informed to ensure it’s a proper choice and that they have proper control. Of course, there are many challenges involved in any system, particularly in Australia. I think it would be a hell of a lot easier in a small country, but when you look at Australia, we’ve talked about it before, providing services to remote communities is a real challenge, whether it’s NDIS or not. It is a real challenge. What’s best in terms for the service itself––I don’t think NDIS understand this themselves––that is, the importance of the education of their planners to understand what advice to give. Thirdly, we learn from our mistakes. We should all learn from our mistakes as we go through life. I think I made my first mistake a week or two ago, something like that! But we have got to learn from our mistakes as we go together. Finally, as we have said over and over, we want to work together.
Thanks to those people who have contributed this morning. It has been very good. We will now break for a cup of tea and resume at quarter past eleven, so you have 25 minutes to have a cup of tea and a yack. We will then get on with our Harry Blackmore Award presentation and the Q&A session. Thanks very much. I look forward to having a cup of tea and welcoming Geof Parry.
[Applause]
[Tea break]
BARRY: Can you take a seat, please, ladies and gentlemen.
Each year the Deafness Council presents an award; an award for an achievement on behalf of people who are deaf and hard of hearing. This year we have asked our patron Harvey Coates AO to do the presentation. Harvey is a paediatric otolaryngologist and clinical professor at the UWA School of Paediatrics and Child Health and the university department of otolaryngology. He is also a senior ENT surgeon at Princess Margaret Hospital. He is chairman of the Aboriginal sub-committee of the Australian Society of Otolaryngology, head, neck and surgery. Amongst his many interests are newborn hearing screen and Indigenous children’s ear disease. For a man who is supposed to be retired, he’s very actively working. He has just come back from up north providing services again to Aboriginal children in WA, and deservedly has his AO as an recognised outstanding Western Australian and Australian. Please welcome Harvey Coates. [Applause]
HARVEY: Thank you very much for that kind introduction. I should also like to acknowledge country, and anyone who is interested in otitis media, before I say anything more, there is a new app called the otitis media app, available in the App Store under the term “otitis media guidelines”, which I strongly recommend you look at. It’s super. I should like to thank the three judges of the Harry Blackmore award: John Richards, Karen Bernard and Sarah Livingston. I should like to talk regarding the young lady who is the recipient of our award. Dr Dona Jayakody received a master’s degree in audiology and speech and language from the University of Bangalore in India 2005 and worked as the head of audiology in the Durdans Hospital in Colombo, Sri Lanka, where she started the universal newborn screening program and given an award for her work on cochlear implantation. She completed a PhD in audiology at Canterbury University, New Zealand. After completing her PhD she came to Western Australia and took up her post as an audiologist.
In 2014, she commenced a full-time post-doctoral research position at ESIA focusing on cognitive decline and hearing loss in older adults. As many of you know, there is now a relationship that people with untreated hearing loss in old age have twice the chance of developing dementia and cognitive issues. So her research at present is identifying this causal relationship between hearing loss and dementia; developing tests––a central hearing assessment that will help identify those people at risk of dementia––and investigating the impact of hearing loss rehabilitation, using hearing aids or cochlear implants, on the cognitive function of hearing impaired older adults. She currently leads the Australian Cognition and Hearing Loss Project at the Ear Science Institute and she’s looking at this association that we’ve been talking about. We know that untreated hearing loss in older adults can be associated with clinically significant anxiety, depression and stress. They also have noticed with the research that cochlear implant recipients showed a significant improvement in a number of their cognitive assessments, a year post-implantation. In addition, to this, she’s doing many other collaborative projects, some with Professor Ralph Martins at Edith Cowan, at the University of Western Australia. She does collaborative research with universities and groups in China, Singapore, the Netherlands and also in Denmark. Dr Jayakody has 18 peer-reviewed publications and has given her research findings at some 80 national and international scientific presentations. She is a very worthy recipient of the Dr Harry Blackmore Award. Thank you. [Applause]
BARRY: The award will be presented by Geoff Reader who was our winner last year. [Applause]
GEOFF READER: Congratulations and well-deserved. [Applause]
BARRY: I’ll hold this down.
DONA: I’m very honoured to have received this award and I would like to thank Barry and the Deafness Council of WA for giving me this award. This award encourages me to continue the work I have been doing, and help increase the hearing awareness in WA. Thank you. [Applause]
BARRY: It’s not meant to be a criticism, but you can see that good things come in small packages! Congratulations. By the way, the Dr Harry Blackmore Award is named after an outstanding Western Australian who is not with us anymore, but Dr Harry came from a family, I think most of his family were profoundly deaf. He was an outstanding man and a great leader, and he was president of the Deafness Council for many years; and, in fact, to this day of our 40-plus year history, our only life member, and deservedly so.
We come to the panel, and the panel today, the Q&A, is to be chaired by none other than Geof Parry. Come forward, Geof.
GEOF: You were talking about small packages.
BARRY: No, no; you’re a big package. You used to be a small package! I have known Geof for a long time. Geoff has been a journalist for more than 40 years, most of those with Perth’s highest rating channel, Channel Seven. He has covered some of the biggest stories in Perth and Canberra for four decades. He lived in the national capital for eight years, and didn’t get spoiled too badly, during the John Howard administration. While state and federal politics has dominated his professional life, he has spent many years covering some of the world’s trouble spots and natural disasters, from unrest in South Africa during Apartheid to civil wars in Somalia, the Baltic states and East Timor, Iraq Afghanistan and the Middle East. He’s been punched, spat on––I didn’t spit on you, did I?
GEOF: No, you didn’t.
BARRY: He has been chased, and shot at , and he still gets nervous when he faces a room full of deaf and hard-of-hearing people. He rates his career highlight as an interview with Nelson Mandela after his release from prison. He was the first Australian journalist granted an interview with him. Geof has a wife and two children. His youngest daughter Caitlin is deaf after contracting meningitis as a three year old. Geof, every year, without complaint, gives us his time to handle this session. We do thank you for his time. He has just returned from Italy and ensures he hasn’t got that virus.
GEOF: India.
BARRY: Welcome back. He’s joined on the panel today by Blanche Coyle. We have already introduced Blanche earlier, but to give a brief resume. She was a high school teacher and transitioned from education to audiometry. She is the manager of three Hearing Australia centres. As you heard before––you should try to encourage Geof to do this––she runs marathons! So there you are. What are you laughing at?
GEOF: Me? I’m not laughing. [Laughter]
BARRY: Thank you very much, Blanche. From the NDIS today, we have––I excuse me if I get the pronunciation of your name wrong––Fadzai Matambanadzo. She is the assistant director with the community and mainstream engagement team at the NDIA. The Auslan consumer today is Jayde Perry. Jayde is a hearing person but she comes from a family who has a profound interest and involvement in deaf. Her father is profoundly deaf––uses Auslan––and so were her grandparents. Her mother, Fiona, is an Auslan interpreter. Currently Jayde is general manager for Access Plus Deaf and family experiences. Did I get that right?
JAYDE: Close enough.
BARRY: Near enough. The NDIS parent is Bronwyn Doak. We saw her son earlier today. He obviously takes after his mother. Bronwyn is the mother of six children––doesn’t look old enough to have six children, do you?
BRONWYN: No. [Laughs]
BARRY: Two of whom have Usher syndrome type 1D. This means that they were born deaf, have balance difficulties and are gradually losing their eyesight due to retinitis pigmentosa. Eamon and Kealan were fortunate to receive bilateral cochlear implants at an early age, and although these provide hearing, there is a lot of work required to make them effective. Hear, hear! Bronwyn is the main caregiver and is responsible for taking the children to therapies, assisting in the classroom and supplementing lessons and therapies at home. What do you do in your spare time?
BRONWYN: Sleep. [Laughs]
BARRY: I’m sure you do! Alicia Zulberti––come on down––comes from Wanslea one of the partners we looked at earlier through the NDIS presentation. Alicia is the central north metro region coordinator for the early childhood early intervention program at Wanslea. Alicia manages a team of allied health clinicians and early childhood educators to implement the early childhood program. The program is designed for children aged under seven who present with a developmental delay and/or disability. She is an occupational therapist with over 10 years’ experience working within the paediatric sector. She has worked in a variety of community, acute hospitals and educational settings in Australia and the UK. You have our panel under the expert guidance of Geof and through this process we hope to hear from these people, from a lot of the experiences and firsthand knowledge of what it is like to handle the NDIA process and the strengths and weaknesses thereof.
GEOF: Thank you very much, Barry. Hands up how many people I nthe room have been tested for coronavirus? I have.
BLANCHE: How did you go?
GEOF: I did very well actually. I have another strain of the flu and I apologise, but I’m not infectious. I’m past that so if you get sick, it’s not my fault. And to all the people who shook my hands today, [Laughs] you’ll probably regret it! [Laughter] No, I’m kidding. [Coughs] Excuse me.
I haven’t had a lot of time to prepare because I’ve been a bit a bit ill, but I do know a little bit about this. I certainly know about raising a deaf child. Harvey operated on my daughter; Geoff taught my daughter. I know people in the room. Ron and Sarah, who I have known through the speech and hearing school. Barry, of course, we’ve had that connection for years through politics, so, hopefully, we’ll muddle through this in the next hour. Can I ask Blanche firstly, what time did you do in the London marathon?
BLANCHE: 4:07.
GEOF: Four hours and seven minutes?
BLANCHE: Yeah. I can do better!
GEOF: What! Are you going to do it again?
BLANCHE: I’m doing Chicago this year.
GEOF: Oh, okay. The Chicago one; you’re not going to do the Boston one?
BLANCHE: I’ll have to qualify for the Boston one; we’ll see. [Laughs]
GEOF: It’s about the NDIS and the experience with the NDIS and its pitfalls and problems that people may have encountered over the years––the few years that it’s been in. Can I ask, Bronwyn, are you involved with the NDIS?
BRONWYN: Yes.
GEOF: Have you found it to be a success? Because we have heard lots of? Stories and even horror stories––not necessarily hearing, but for all its folks
BRONWYN: There are definitely teething problems with the NDIS. I’ll tell you about our journey. Better Start was coming to an end and we needed to move on to the NDIS, and my husband contacted them and they said you need to wait a for a phone call. We waited and waited and waited. Nothing came through, so eventually we took it upon ourselves and contacted the NDIS again and said you need to understand our Better Start is coming to an end. We’re in the north of Perth, so I was told there’s no-one in the north of Perth. I thought okay.
GEOF: No-one ––
BRONWYN: Yes, no-one in the north of Perth to handle our NDIS plan at the moment. They hadn’t set up offices yet.
GEOF: They hadn’t realised there were a million people living up there?
BRONWYN: Yes, not so far. Then we asked who we could go to and we found someone south of Perth and got an appointment with someone south of Perth, who was very accommodating. They asked what do the boys have. We explained to them and I said to them as well, I said we need someone to sit down and talk the plan through, tell me what I need. They asked where would you like to meet. I was told––I had already spoken to a lot of parents who had gone through the NDIS, so I had a feeling on what to do. They said, “We can meet you at your house”, and I said no. I said you’ll meet me at Telethon where I have most of my backing and most of my support. They agreed to that as well. So we met at Telethon. They asked about the boys’ condition, and as far as I’m concerned, they should have known a little bit more about Usher syndrome and not really––we are parents, we can tell you so much, but also do your research into what our boys will need, what they are going to go through and that. You know, they’re going to lose their eyesight. They have balance issues. Each Usher syndrome is different in every scenario, every case.
From there our plan was––we were allocated a person to help us with our NDIS plan. She was fantastic. I must admit. She was really, really good. She knew her stuff. They listened to me. They got someone who did their research in Usher syndrome and then we were referred to north of the river. Apparently, they were in Wanneroo all along [laughs] which we didn’t know. So we were then sent from south to north with their help.
There has been––I must admit we did get an awesome plan, but that was me fighting for the boys and every step of the way. They don’t know, like, what my boys go through each and every single day. They don’t live it, so with Eamon has already got a night line so in the evening he does need to use a cane. At school he will need training and help there as well. We need physios, we need OTs, we need special swimming lessons because my kids can’t go to HBF arena or normal swimming pool because it’s just too loud. They can’t hear. We had to fight for that as well, and they were approved to go to special private lessons in a house, which is fantastic. What else?
GEOF: Score them for me; score your experience out of 10?
BRONWYN: Um.
GEOF: Fadzai is sitting right next to you.
FADZAI: I know. I’m here to listen.
BRONWYN: I know. I would score you about a six, the reason being that we were told by you––we were in the process of getting a house––and they said to us whatever you do, rather build than buy. So we started building and it was in my plan before I spoke to the NDIS agent. I said “Please put it in the plan because our builders need to access this straightaway in order for us to get our finance.” When we came back to the NDIS plan, it wasn’t put in. Now we have had to go through the whole thing all over again. Our building has been prolonged. Now we have to go through getting new finances, and all that over again.
GEOF: A six out of 10; do you take that on the chin?
FADZAI: Yeah, I think any reform as big as the NDIS, you know, the second largest reform Australia has seen since Medicare and a world-first scheme, I think we are literally creating as we go along. There is no blueprint for what we’re doing. To some extent it’s not surprising, but definitely areas for improvement for us, many areas that we have to improve on.
GEOF: It’s only a few years that the NDIS has been––a couple of years, isn’t it, two or three?
FADZAI: In WA, since 2018.
GEOF: Okay, so in its short infancy are you happy with the way it’s tracking? Are you encouraged or do you hear stories that mirror this one and some are probably worse and some are probably better?
FADZAI: There’s definitely a mixed bag. What makes––it is people’s lives that we are holding in our hands, and I think that definitely has to be acknowledged. I personally don’t have a child with disability, but if I did, I would also be quite fired up myself. I think this is people’s lives and I think that that needs to be acknowledged. I think there are a lot of teething issues as you said, a lot of process issues, but I think the intent of the scheme is to improve people’s lives.
GEOF: Bronwyn said when she contacted the organisation, the first people who were involved weren’t aware of what Usher syndrome was; they were not across it. Does it work the other way, too, where people who come to the agency aren’t as prepared as they could be––I’m not saying that’s the case; it certainly isn’t the case here––in educating? Is that what your folks need––more education? Do they have the time to do that?
FADZAI: In terms of––I mean, our staff have to understand lots of different types of disability, and we do have a team, a technical advisory team, that offers a lot of technical advisory support to the planners as well they, and they tend to have the more technical expertise in certain areas. But in terms of consistency I think our staff are not medically or clinically trained necessarily. They really are usually going literally by what’s in front of them and sometimes that can be a bit of a mixed experience for people. But it’s hard to say with not knowing exactly the nuances of the situation, but generally speaking––and it happens a lot particularly with participants with very complex health needs as well––understanding those nuance of certain conditions. But we do do our best.
GEOF: I’m sure you do. I will come back later when we open up once we have gone through the panel and I’m sure people will have questions for you. Blanche, Hearing Australia, how do they interact with NDIS? How does that work; explain it?
BLANCHE: Not as well as it should, to begin with. I think for us, when do you have someone who is advocating for a person with a hearing loss, you can go to the planner and you may be able to speak for yourself, and the squeaky wheels seems to be gathering the most attention at moment. My fear is those people who can’t advocate for themselves, and even when you do have all the information about what NDIS funding may be able to give someone on top of what is already existing in the community service obligation, there seems to be, again, a lack of understanding between the planner. So a few examples of what I can refer to is when a planner has told a participant that they would be able to get higher level technology, because they needed their hearing aids to directly stream to a telephone and they couldn’t wear a neck loop or pairing device because he was a tradie because there was a work health and safety issue to have something hanging from their neck. This started in November. We went through all the applications to do to make this happen. He was lucky; he had his father advocating for him. He ended up losing his employment because it didn’t come through, even though we had been given a verbal that this would be in the plan. We ordered the devices; we made appointments. We had to reschedule them because we were waiting to hear back again. Then the outcome was that the planner had given misinformation and it wasn’t going to be approved at all.
GEOF: He lost his job?
BLANCHE: Yeah, or he may get it back again. We have managed to find a solution.
GEOF: Isn’t there a legal––I mean, you just can’t sack someone for being deaf.
BLANCHE: If you’re casual you don’t have to give them anymore work.
GEOF: You shouldn’t be able to sack someone because they are deaf.
BLANCHE: I’m not arguing with you [Laughs].
GEOF: All right; please continue.
BLANCHE: Another plan that was developed was for someone who was a shared client between us and the Ear Institute, and part of the plan had information for a computer that was going to do something with a cochlear, and the client came to us and they were really angry with us because we weren’t giving them a laptop, and I explained that that is not what our services do. But that is something that the planner told them. I think there are a lot of Chinese whispers going on and that is where there are some services that aren’t linked up.
GEOF: You do a lot of with older people, aged pensioners. Are they a particular problem group inasmuch as getting––in their dealings with NDIS?
BLANCHE: Well NDIS are only going to deal with people up to age 65 and we think that’s very young.
GEOF: We agree, don’t we, Barry!
BLANCHE: [Laughs] But Hearing Australia does not deal with aged pensioners.
GEOF: Are they, even that group, do they have trouble relating to NDIS and getting their messages in and doing all the paperwork?
BLANCHE: Everyone is having trouble. I think the early interventions or the parents are having trouble. I think the 26 to 65 who haven’t been able to access help before, are not quite sure what is going on. Yes, there are a lot of gaps.
GEOF: Jayde, what is your experience?
JAYDE: I have a mixed experience.
GEOF: Good, bad, ugly, whatever?
JAYDE: I feel like I have an example for everything. I will narrow it down. On the positive side, the Auslan users of our cohort prior to the NDIS didn’t get much access to anything, so they now have an opportunity, which is great to see, but not everyone is aware of those opportunities.
GEOF: What are the needs of Auslan consumers?
JAYDE: Basically interpreter access. So now things like consumers have an opportunity if they want to take their dog to the vet, they can bring an interpreter with them to understand what their dog needs. That was something that was not available prior.
GEOF: What about someone who was an Auslan consumer and had a dog before what would they do before?
JAYDE: Make the best of it; rely on hearing family; note, paper and pen; gesturing and often feel limited in the information that they receive. Now that choice has gone back to the Auslan consumer if that is what they would like to use. We see a lot of people having great connections with their family. If they are the only Auslan user in the family and their parents or their extended family didn’t learn Auslan or didn’t learn it to the standard that the individual now has, they feel there’s a lot of communication barriers there. Now they can bring interpreters or communication supports to family gatherings at Christmas time and that sort of stuff.
GEOF: How easy is that to organise?
JAYDE: In our space at the moment, extremely difficult because we have a supply and demand shortage in that space. So the NDIS was great but the sector didn’t catch up with understanding what the supply and demand would look like. Now we’re busily now trying to advocate for more training for learning the Auslan language and also to get people trained as interpreters and communication supports to provide the access that consumers now require.
GEOF: There’s a job opportunity, obviously, there. What numbers are we talking about?
JAYDE: We did some statistics, and from prior to the NDIS coming out to now, just for Access Plus, the amount of jobs we are not able to provide has increased by 30 per cent in three years. That’s about 4 000 hours of Auslan interpreting.
GEOF: One more quick example. Give us an ugly one.
JAYDE: An ugly one is that they love the cookie-cutter model unfortunately. Everyone who is an Auslan user apparently needs the same amount of support for interpreting each year. That is an issue. We have had some situations where if an Auslan user chooses to have technology such as a cochlear implant or hearing aid, they may be denied Auslan interpreting as it’s seen that you may be able to speak or hear and it’s your choice of communication.
GEOF: Alicia from Wanslea. Can you give us a quick rundown on what Wanslea does? You deal mostly with early childhood, don’t you?
ALICIA: That is right. Wanslea was appointed a partner in the community to roll out the early childhood intervention approach of the NDIS. I’m going to frame it from a bit more of a positive perspective, and that is just because there’s been some learnings. In WA being one of the last to rollout, the learnings from over east identified that we need to treat children under seven differently. We do know that early intervention is important. This is how the ECEI––I’ll use the acronym––has come about. Wanslea has a history of working with families in WA for about seven years, and some of you are probably familiar with them. We were appointed the partner in the community only a year ago. It’s all very new. So Wanslea has always worked with families and offering family services around in-home care. Originally it evolved from fathers going to war, so family focus is a huge part of the organisation and that’s why the organisation was appointed to roll out this part and represent the NDIS.
As an organisation, since we went live in the south metro area of Perth in May last year, we then went live in the north metro in July, so it’s all in the infancy. I think we have been learning as we go, but I really want to push a point that Wanslea has employed all practitioners. So when I say that, we are now supporting both the north and south metropolitan areas, the great southern the south west and the inner wheatbelt. We have teams in all those regions who work with children who are eligible for the NDIS––or even if they are not–– and we support them with mainstream supports. Those practitioners are from health professional backgrounds, so they are OTs, speech pathologists, educators, nurses, so we have a team of expertise. I think that is really important, because we are working directly with those families and children and we are planning with them, but we come with our knowledge and expertise there as well around the early childhood, disability, developmental delay and all the best practice principles around therapy.
GEOF: Funding, we hear a lot about the Australian government underfunding a lot of the NDIS or some of the aspects of it. Do you have any problems with your organisation getting funding?
ALICIA: We are representing the NDIS––are you referring to the funding of the participants plans?
GEOF: I think the plans––people’s individual plans. I think a lot of it is inadequate. If anybody wants to pick up on this.
ALICIA: I guess it’s an individual needs basis. We work directly with that child, with that family and we really work through what are the needs, what are the parents goals, what are the child’s goals if they can identify their own goals. It’s all come back to the NDIS legislation, so reasonable and necessary. But we also have to in our space consider things like parental responsibility and a few other things that come into play as well as early childhood intervention and what we know is best practice to assist that child to improve on their functional outcomes,
GEOF: Jayde, what is your view on that?
JAYDE: I understand the legislation component, but, unfortunately, back to that cookie-cutter model, we’re seeing a lot of “This is your barriers, therefore, this is what we think you need, and then that’s it and we’ll just whack in a goal at the end to make that work, is what we’re seeing unfortunately more often than not for people who are not able to be like Bronwyn and self-advocate.
GEOF: Bronwyn, you have to be tough, don’t you, and you have to stand up for yourself?
BRONWYN: You do.
GEOF: Is that the message for all parents or just anyone who needs to access NDIS?
BRONWYN: Yes. I have had a lot of parents come to me and I have been able to give them advice on you go this way, you need to do this and advocate for yourself. A lot of parents will go into it not knowing and then when they get their plan back, it’s like not what they wanted; it’s not what they get. They can’t do half the things they need to do with their children on that plan, so they have had to go back and have it reassessed, which takes another six months or even longer, before you can access your plan properly again. I think you should actually, like, involve your parents quite a bit as well, like, speak to them because they are your best people to talk to. We go out there and advocating for other parents. Like at school I have another mother, “What do I do? What do I say? How do I go about this?” because her planner hasn’t told her, hasn’t helped her. I didn’t know I could even get a support worker until recently and then I was told––when I did apply for a support worker to help me, because I have the three boys who do activities at different times, I can’t divide myself into three. So I need someone to help me. I phoned someone and they turned around and said, “Sorry, we can’t help you, you’re north,” again, north. Then, or I will get back to you. These are the support workers. I asked NDIS to give me agencies because I don’t want to organise that. They need to organise it, they need to pay for it, and it’s part of the funding and that. Now there’s a website on a Facebook page with parents that access NDIS, and there’s a lot of don’t use them, don’t use them, because you guys haven’t come forward.
GEOF: What’s that about––you’re north, you’re south?
FADZAI: I’m just making an assumption here, it think it is the way in which we rolled out. NDIS rolled out in a staged approach. It wasn’t available everywhere at exactly the same time because of the amount of participants we have to get on the scheme––half a million Australians. It was done in a staged approach in most states. So I would assume, based on the limited information there, if you didn’t get a call, it might have been because it hadn’t rolled out in your area yet and you had to go to another area.
BLANCHE: It had rolled out because another friend of mine had hers done but I had to keep phoning and phoning and making sure, because once my Better Start ran out we had to fund for ourselves.
FADZAI: Okay, so there are a lot of moving parts and I think that’s part of the––it does get quite complicated, but, yeah, we didn’t roll out at the same time everywhere.
GEOF: Blanche, you’re another government department, another government agency. Reflecting on NDIS, is it generally heading in the right direction from Hearing Australia’s point of view? Is it working? Obviously it needs refinements and that’s part of the growing process?
BLANCHE: Yeah, I think we have had examples of where you can see that it has taken a government system that we have already got and then we have been able to add on things so there has been additional funding for another FM system if a child needed it in a school––or once upon a time we had some hearing aids that were specific for a sporting event that we would use our CSO funding for, but we could get some additional funding there. Is it heading in the right direction? I think it’s intending to head in the right direction. Forums like this, where we get to discuss what’s not working and hope that that feedback loop does control the direction and it’s not free-falling, then I’m hopeful.
GEOF: Should we open it up to the floor. Does anybody have a question?
JOHN: I have been profoundly deaf since I was a child. I am not eligible for NDIS. I work full time. I am in my mid-70s. I’m not an Auslan user. I have very significant problems. You mentioned taking your pet to the vet. Well, when I take my pet to the vet, I make sure the vet writes things down for me. If they don’t, I will shop around for another vet. But medical specialists, you can’t choose medical specialists. You have to wait three months. They simply can’t communicate in writing. They tell me nothing at all. What access from Access Plus––what is basically being done for people profoundly deaf who are not Auslan users and people who use captions, like I am for example? It is a common situation. I think there are far more people who use captions and far more people who communicate like that that than use Auslan. What is being done by NDIS and other organisations to cater for people like me who do not use Auslan but have huge communication issues when they go to specialists?
GEOF: What is being done?
FADZAI: That is a big question. I guess one other thing––I think someone touched on it before––is NDIS doesn’t just give funding to individuals. We also have information linkages and capacity building grants that we give to community organisations, and that is open to all community organisations for all members of the community to access whether they are NDIS participants or not. I guess – these are great ideas for organisations to put forward projects for the community that everyone can access as well. I think a lot of these platforms are available, and we are always looking for very kind of innovative projects to improve access and inclusion of people with disability generally as well.
GEOF: Some of those programs can you––what sort of community programs that would get funded?
FADZAI: Basically it’s called “information linkages and capacity building grant”. It’s released every year.
GEOF: Is it colour coded and depends where you live and who you voted for? [Laughter]
FADZAI: No, this one is a lot wider. The organisations that apply for these grants can be any organisations and the projects that they do are open to all people with disability not just —
GEOF: What sort of applications––what sort of projects would you entertain? Would it be something like––something to do with captioning?
FADZAI: Yeah, I think if you go on to the website and you gobble ILC grants NDIS grant, it will come up.
GEOF: Would that go to something like helping to train interpreters?
FADZAI: Yeah, people have put forward a lot of different types of projects. There have been so many. Some of them have been training people in the community to help participants get access or to do with, you know, sporting projects I’ve seen for people with disability. There are literally a whole spectrum of different ideas that people put forward and the grants range from $20 000 all the way up to $2 million or $3 million per organisation. That is another way those gaps, non-NDIS participant gaps, can be filled as well, by community organisations.
GEOF: Any other questions from the floor?
AUDIENCE MEMBER: What would you say the refinement process is at the moment for NDIS so that we can get to the stage where we’re not having to hear parents fighting for the services? What is being done, I guess, to have that continual touch-point with families or how are you getting feedback to ensure that we’re moving forward with NDIS?
FADZAI: Part of my team’s role is to feed back some of these kind of what we call systemic issues that keep coming up. On top of that we are launching the “participant service guarantee” which is aimed at improving a lot of these kind of operational gaps and inefficiencies, so the minister is really driving that. A big part of that was the Tune Review, it was a massive review of the legislation. Mind you, the legislation was done prior to the NDIS––prior to anything really. Even the bilateral agreements were done before the act was done. So a lot of the Tune Review highlights a lot of what is being discussed today in terms of improvements. It’s definitely been acknowledged, and I guess it’s now operationalising that. That will be done through the participant service guarantee predominantly, and my team is also, as I’ve mentioned, responsible for feeding back some of these issues, particularly when it’s a policy focus as well. A lot of the wait times, particularly in the early childhood and early intervention space is a big focus with the participant service guarantee as well. These things do get looked at when we feed back some of these systemic issues as well.
GEOF: Alicia, does Wanslea have its share of shouty parents?
ALICIA: We’ve had a bit of everything. But to be honest we’ve had more positive feedback than not. Bronwyn, I would love to know when you refer to who you spoke to in the south and in the north, whether it was Wanslea or the actual agency, because we did only go live, as I mentioned before, in May the south so that might be why you were linked up with someone there and then moved up to your region when we went live in July in the north metro region. But when families have worked with us, they have given us very positive experience because, as you mentioned before, the lady you worked with I would hope that was one of our practitioners, was great, because that they have that expertise so they do understand and they can really work it through with families. Obviously we are in a huge transition, so those teething issues that have been mentioned will happen, but we’re refining on a daily basis. I would like to say it’s improving a lot.
GEOF: What’s it like for the person on the other end of the phone who is taking the phone call and they have got to get their head around something they might not be familiar with? It must be difficult.
ALICIA: As in, for us or for the families?
GEOF: For the person who takes the call, for your operators who deal with the families? What is it like for them?
ALICIA: It is quite challenging because we are also learning. Whilst we have been appointed a partner we are having to learn the NDIS as well as represent them. So we are in the middle there and trying to be a mediator between the two. It can be challenging, that is the best way of to describe it. But we learn along the way and we have supports from the agency as well, particularly in our space there’s an early childhood services branch that works nationally. I just want to really make it known that our ECEI program is for children under seven. So whilst we talk about children in general, it is important to know that we are only for under seven and if they’re over seven, they are likely being seen by Mission Australia or APM. Children fit in the two spaces there. I can only speak for one realm.
GEOF: Jayde, do you have any sympathy for people dealing with these issues?
JAYDE: I do, because if we look at the statistics we have gone through today there are a lot of people in society who have a hearing loss, but how many of those are actually going to be the half million people who are in the NDIS? It’s really––when we expect a lot of these planners to know a lot about everything––all different types of disabilities. So I think, as Mark alluded to in his speech, we don’t necessarily have a hearing expert based in Perth. That would be a great opportunity to have that and have us as the service providers and the community work closely with the NDIA, because we are the experts in the field and would be able to provide that information to those who are creating these plans. But I could imagine that there is a lot of information that everyone needs to be across, and hearing is a small aspect of their wider job but it’s important that they get that part right as they need to do with all the different types of disabilities they come across.
GEOF: Are you able quantify how many of the cases that NDIA deals with that––how many of them are hearing related issues?
FADZAI: I would have loved to get that data before I came here. It is on my to-do list. But I didn’t get around to it. Generally speaking, with disability, there are 4.3 million Australians with a disability, and we are projecting half a million of those to have access. If you just use that ratio, I’m not sure how many have hearing impairment in Australia, but I would assume a similar ratio would apply to that cohort of people.
MARK: About two per cent.
ALICIA: Can I speak to the hearing stream?
GEOF: Please.
ALICIA: Because I just feel that being in the ECI space it is important to note there is a priority pathway for hearing. What happens is a child who is––again I am going to speak about children here––diagnosed with a profound hearing loss will potentially be eligible for the hearing pathway. This is a priority pathway where an access decision must be made within two days and the family be notified. After that they then should have a planning appointment within two weeks. Now that planning appointment is with a hearing team. So they are a hearing specialist team and they will do that over the phone generally appointment with that family to ensure that they can set that child up with some funding so that they can start to access whatever their needs are, so therapy or AT––assistive technology. From there, that is where they come back to us and we will continue to work with the family to identify if there are any other functional needs. Then we would build that into the plan as well. We will continue to support that family through their monitoring, supporting them with their linkages into the community services, and also reviewing their plan on a yearly basis.
GEOF: So you have case managers and that person would take that for while they are employed at Wanslea and that would keep those same cases?
ALICIA: Yes. Our practitioners will have a case load and will continue to be that key contact for that family. So if they need support, if during their plan they sort of get lost a bit in the system, they can call up that practitioner and get some additional support there.
GEOF: Any other questions from the floor?
AUDIENCE MEMBER: This is a concern more for me. I’m from the School of Special Education Needs, Sensory, so we are the public arm for deaf education throughout the state of WA. We have students who are in mainstream schools and our visiting service goes out to visit the students in the school. With the NDIS the feedback I have been getting from staff is that therapies are now coming into the schools and working with the kids in the school. Our concern is the lack of collaboration, because you have a speech therapist who comes in, withdraws this child and works with the child. What work is being done with the child is not shared, so the classroom teacher has very little information. The child is withdrawn from mainstream classes for half an hour to have therapy during school hours. Some parents choose not to have the therapies go to the home, so school holidays the child doesn’t get therapy; it is only done at school for 10 weeks. Our teachers have found that in the past we could call up a speech therapist and check about a student and have a plan that is targeted and joined. But with NDIS we found that if we contact a therapist, the clock starts ticking; the child’s funding is, you know, added. So our teachers hesitate now to collaborate with therapists because they’re frightened they’re using up the child’s funds. This is my concern as an educator that we have this fantastic service given to kids but the village is not fully involved in the growth for this child; it’s really in isolation. Whether a student is going to progress is dependent on the parents being able to hold it all together and support the child at home and give that information to the teacher, because that collaboration between professionals is not occurring as fluidly as it used to. This is a concern from education.
GEOF: Bronwyn?
BRONWYN: I have had that problem. We have the funding, and we need to use our funding. So I have asked for my speech therapist or OT to up their times, maybe come in twice a week, not just once a week. And at the moment they are only approved for once a week and they’re still waiting to come in twice a week. If it was done quicker, we could use our funding for that.
GEOF: Do you have this problem where that service stops when it’s school holidays?
BRONWYN: No. I’m …
GEOF: This is not through the school?
BRONWYN: I’m with Telethon so I can go in––but I don’t know, you were saying also.
AUDIENCE MEMBER: [Inaudible] parents are not being involved with the child.
GEOF: Why do they choose that?
ALICIA: I guess the NDIS is all based on choice and control. The family chooses what they want to do. Best practice wouldn’t suggest a therapist going into the school and doing that. Best practice would be in a natural learning environment and the collaboration. But I guess it’s up to the parents how they want to use their funding, and it would be about perhaps with––excuse me––our practitioners also supporting the family. And again we are new, but over time I would hope to think that our practitioners who are professionals in that space would be able to help to build the capacity of the parent to understand what their child’s needs are and what they should be accessing and how to advocate for their child. That is where our role comes into play.
FADZAI: I definitely agree with that. That core principle of choice and control, I think it is very much a governing principle with the scheme. Where a parent chooses that, that is what they have chosen, and our job really can only be to try to educate parents and carers in terms of the impacts of certain decisions they make. But, ultimately, the power to make the decision, whether it’s agreed up to or not, is really up to them. And when that child becomes older, again, when they are 16 or 17, they do get a lot of that choice and control as well.
AUDIENCE MEMBER: I wanted to add to that. When you ask why parents may choose not to have therapy at home. You have parents out there who are working, who have numerous children, maybe have issues themselves, and I think it’s––you might be having as a parent, you’ve got five different therapists that you need to see for each of your children. So it’s a juggle. Therefore if––they are at school so it’s great if they can have that, but it is crucial that the connection between therapy and school is there, because you should be working for a holistic approach. What’s happening at home, at school and with the therapist, should be consistent across the board. I think the difference with Bronwyn is she goes to a school that’s an outpost school that fosters that and carries it through. But with your public schools there isn’t that consistency and when you are bringing in service providers, yeah, who are providing service around––unfortunately some of them are profit driven, and it’s about that rather than looking at what the actual individual and family needs.
GEOF: Profit-driven––does anyone want to take that up?
JAYDE: Very passionate about it.
GEOF: Go for it.
JAYDE: I totally agree with what Telethon Speech and Hearing’s presentation was about and having that holistic approach with the client. We share a lot of clients these days. Back in the block funding model it was very much these are mine and this is all you get. Whereas, now we are referring clients here, there and everywhere, and I strongly believe that if you have an individual who has multiple service providers around them, they are going to get the best outcome, and if those service providers have the opportunity to work together and share that goal, it will be amazing for that individual. That is what excites me the most about the NDIS.
BLANCHE: I want to say that in that same space I am concerned that when Hearing Australia previously has had exclusivity to outreach Aboriginal and Torres Strait Islander, and if people are therefore moved from CSO to NDIS and then have the choice to go to a private provider, it does concern me that maybe some profit-driven company might get in there, do it and then what happens; what’s the follow-up. That is the flip side and concern.
GEOF: Is that the case? Are you seeing operators coming forward because they can see a buck in it?
BLANCHE: I would imagine that is––
JAYDE: I will call it. Yes.
BLANCHE: I say that July 2020 will be very interesting.
JAYDE: We are also seeing a different standard of services being providing. So we may have had in the past some tight rules and regulations about the way a service could be provided and maybe people who are profit-driven are happy to bend the rules and if the individual receiving that service isn’t aware of that that can cause issues down the track.
GEOF: This is from July this year?
BLANCHE: For Hearing Australia.
GEOF: July 2020, for private operators? What happens in July 2020?
BLANCHE: Yes. So up until this point we have been told that we need to advise all our clients that they can remain with Hearing Australia or go with NDIS, and if they are an NDIS participant, they can choose to go to a different provider. What the follow-up will be from that, I don’t know.
GEOF: Any question from the floor? Barry.
BARRY: The question I had was: The participant service guarantee––what does that mean and where do we get details of what it means?
FADZAI: The participant service guarantee is––and I hope I explained this properly, but you can goggle that and it’ll send you a link to the website and the Tune Review as well. But it’s basically the minister’s commitment to improve or to get closer to that original intent of the NDIS, which was to be very participant-focused and to improve the experience, have a much better quality experience for the participant. So the participant service guarantee is almost like––there is intent to legislate it as well, to make it a service guarantee to participants to improve things like processing times, wait times, the time it takes to get to a planning meeting, review times. There are a whole range of things it basically guarantees for the participants. You can definitely goggle that and it will come up on the website. Don’t quote me on that. I think it does, doesn’t it?
SONYA: It does. It comes up on the Department of Social Services’ website which are the ones who did the review and basically within that guarantee you have a full table that tells you what the process is, what the current average time lines are versus what the guarantee is going to be for reductions in time lines. In some cases it is an increased time lime. For example, a participant or their family might need to give further evidence about what they want in their day-to-day life and so I think the time for that have now been extended versus a lot of our wait times, turnaround time for giving a plan, is actually on there, so you have a time line of what we have to commit to.
FADZAI: That initial example, the increase, when you get asked for more evidence at access stage––again an increase in that time, from 28 days to 90 days, for example, so people have more time to gather evidence when it’s requested and things like that are in the participant service guarantee. It will drive a lot of our changes in the agency, so definitely worth reading and, as Sonya said, it is in that table format so it’s probably easier to dissect in that format.
JOHN: Just like art grants. Does the participant guarantee cover eligibility? [Inaudible] that is one in five with a disability. You said only 500 000, one in nine, people with a disability will ever get serviced by the NDIS? What about the participant guarantee in terms of eligibility.
FADZAI: Those numbers that the Productivity Commission projected––I think also the NDIS, to take it a bit back, is an insurance-based scheme. As much as the quality of service is important, the financial sustainability of the scheme is also quite paramount, because once participants have access to the scheme, they have access for life, and that is a very different from the welfare model. So we almost have to make sure that from a financial point of view these funds will be available for all those people for the duration of their life span. So the financial sustainability aspect of the scheme is probably equally as important and does drive some of these projections and numbers as well. I guess the other––I can’t do my math––three point something people with disability, as mentioned before in Sonya’s presentation, the NDIS does not actually replace anything; it is in addition to other services as well. So through other programs and other mainstream services, those other people with disability can still get supports. I hope that answers your question, sir.
AUDIENCE MEMBER: I am a participant in the NDIS. I got a new plan in November last year. It is interesting going to my planning meeting and they were saying to me what my goals were. I obviously said my goals are around communication. So they said to me what hearing device do you have. I have a cochlear implant in the left, but my aim is to get one in the right. In the plan they gave to me, was Auslan interpreting hours and translating with the intention of decreasing the hours I needed for interpreting because they think when I get my cochlear implant. They have put down $10 000 for assistive technology to get a cochlear implant. But my point of asking you is I know medical doesn’t come into NDIS, so they have given me $10 000 to get another cochlear implant so where am I supposed to go for the medical side of it? I know they don’t cover the surgery. I basically have $10 000 sitting in my plan to get a cochlear implant, but I can’t get the surgery. By me getting the cochlear implant, through the plan I will be able to decrease the hours of interpreting. My plan was a great plan, but it was way off the mark.
GEOF: Are you required to––I mean what was your reaction to getting a plan like that?
AUDIENCE MEMBER: I was dumbstruck because when I went to the implementation––is that the right word––they said how do you feel about this plan? I was sitting there looking at it great, interpreting hours, great. Looked at assistive technology, and went, $10 000 for a cochlear implant. They were looking at me like, smiling. Are you happy with that? Yes, I am, but where am I going to get the actual implant from? Oh! They didn’t have any answers for me then. SO I have $10 000 in my plan and, yeah, no implant.
GEOF: It’s interesting. I did a story recently on military veterans, and hearing loss amongst military veterans is a massive issue. There are thousands and thousands of them. It is a growing problem. The DVA will provide only $1400 for the very basic hearing aids. Of course hearing aids cost a lot more than that, up to thousands and thousands of dollars more. But there were instances like, the person who had the hearing loss––the audiologist or doctor ended up putting down a cochlear implant. The government paid it. The government would rather pay $30 000 for the cochlear implant, believe it or not, than the 4 or 5 thousand dollars that the person needed. This is an uncovered issue, but it’s massive and growing. So that is interesting. What is with that, Fanzi, with the person putting in that $10 000? Clearly it doesn’t make sense.
FADZAI: Yeah, it’s hard to sort of give a really conclusive answer without really knowing the full, full breadth of their reasons. But I’m assuming you spoke to one of the partner organisations when you came to your implementation meeting, was that right, or who did you speak to?
AUDIENCE MEMBER: I put it down as one of my goals as communication. [Inaudible] it was with the hope of increasing my interpreting hours.
GEOF: This is not a case of trying to bag the organisation or whatever, but there are those issues there. That is clearly a waste of money––$10 000 sitting there for no purpose or it could go for another use. How tightly do you have to keep the reins on the organisation to make sure you’re getting the best bang for the buck?
FADZAI: I think the good thing is that every 12 months, at least after your first plan you will have the review and those things will get looked at––the utilisation of your plan and what funds you haven’t used and the reasons why. That can be part of what informs how your next plan gets built. Some of those issues can get sifted out at your next planning meeting. I’m not sure when that is and hopefully your funds are allocated more appropriately for you and also communicating that as well to the planner.
GEOF: Any other questions from the floor? Do you want to add to that?
BRONWYN: I wanted to ask you a question as well. With the NDIS planning, obviously a lot of parents advocate for their kids. If my boys have Usher syndrome and I tell other parents they ask me what did you get in your NDIS plan, I will tell them what I got. And they’ll look at me, “But I didn’t get that. How come I didn’t get that?” Why aren’t you advocating for all those parents out there: This is the plan we did for this person. Have a look at this plan. They should be getting the same funding as me or I should be getting the same funding as them.
FADZAI: Yeah, I think––that is a very sticky question or statement.
BRONWYN: It’s more of a question, because, you know, parents talk all the time, especially parents with children with disabilities. I’m not only saying, yes, my sons have hearing loss and they’re born profoundly deaf, but I didn’t know I could get Auslan until I spoke to another dead person who said, “Put this into your plan.” So there should be a standard thing with your people handling our cases that you can get that. Even a friend with cerebral palsy, she got a plan and she said she didn’t get that into her plan.
FADZAI: I think there are two things there, maybe more. There is the role of the parent as an advocate. Every family and every child has I guess their parents probably aren’t as good as an advocate as you are.
BRONWYN: They may not be educated enough, which is not fair on them to say that. Obviously I’m just one of those people. But sometimes you will get a parent who doesn’t know, doesn’t know where to ask; they’re lost. I have a friend who is, “What do I do? How do I advocate?” You guys should be supporting, and saying “We have done a plan for this person, I will tell you what they have applied for––OT, this and this. You can get this.” But you’re not doing that.
FADZAI: Yeah, and I guess not all plans with the same disability are going to get the same type or amount of support simply because of the way I guess the scheme is designed in a way. It’s more about, you know––two people can have the same diagnosis of disability, but the way in which it impacts their day-to-day life is going to be different and that is really what informs access and also the types of supports that you get. I think, yeah, people just have different––the way the disability impacts people at a functional level is going to be different. So that can’t be compared from a diagnosis level; more from that level. That is just one answer to a very big statement that you have made. Then there are the different parents who have education, advocacy levels. Some parents have disabilities as well, which also creates another barrier for them in terms of advocating for their children as much as other parents particularly if they have cognitive or intellectual disabilities. That is also another common theme. But we do try our best to work with parents, particularly within the schools themselves. But through our partners as well, having organisations like APM, Wanslea and Mission in the community talking to parents regularly and on the most part they are all new––about a year old. But I think hopefully as we mature and we have more colocations as well, which we are increasing across Perth, we can be a lot more embedded in the communities and be closer to parents.
BRONWYN: I think it’s being more open on what you can get and not having us fight for it all the time.
GEOF: Do you want to add to that, Alicia?
ALICIA: I agree with everything that has been said. I want to push the point of individualised funding. It is very much about that particular participant, family and their needs. Also in our space, again, how we have the practitioners with that expertise to hopefully be able to coach you through it as well and to build your capacity and educate you all of what is available so you do get that extra support. But also just pushing on the point again of it being so new that everyone is still in that learning. It is still such a transitional time. So again what was said about the maturity of the scheme, I would like to think that we would get to the point where that would be bread and butter almost.
FADZAI: The rumours are a big thing, particularly in the schools. I think that is where a lot of parents meet up and start discussing these things.
BRONWYN: You can understand that ––
GEOF: Social media must be great.
FADZAI: There is a lot of myth busting that our team does as well. A lot of myth busting. We had a group of persons once, by way of example, where about three of them thought they were going to get a new house. So there is a lot of myth busting that goes on in our role.
GEOF: Time for one more question from the floor. I think there was one in the front.
JACOB: A couple of us were getting an NDIS plan and were given forms to fill out which was one-third NDIS, one-third us, one-third GPs, and returned it. I got a voucher––Department of Health, hearing health program. It goes for three years. No indication of value on it. There was some information there about hearing aids, assistive listening devices. But reading a heck of a lot and getting onto a website, eventually I could see a little bit about cochlear implants and assistive listening devices. But it made no mention whether––we say in general cochlear implants––whether that’s the internal prosthesis or the external. Again, no indication of value, whether it is a surgery thing, which is $30 or $40 000, or an external processor which is getting closer to $10 000. So it has left quite a lot of people in utter confusion. It is also the aspect of shifting from the NDIS to the Department of Health voucher, finish with that and potentially shift back to the NDIS. It is just an utterly confusing system really. I wondered whether any of you people know about that voucher system?
BLANCHE: I would presume that the voucher system is just the hearing services provider. So when you talk about the value, it is the fully subsidised hearing aid that Lize presented in her thing, and then cochlear would be part of the NDIS plan that isn’t covered under that, depending on the severity of the hearing loss.
GEOF: I think we’re pretty much at the end of time. I will finish up and go across the panel. Where do you see this whole NDIS thing in five years?
BRONWYN: Hopefully improved. I reckon it will be. I reckon they will have ironed out all their teething issues. I hope.
GEOF: It is a young organisation; we know that. Every government department has a list of problems, but do you think that the department is working through it appropriately, that it has identified where some of the pitfalls are?
FADZAI: I personally think so.
GEOF: It would be news if you didn’t.
FADZAI: [Laughs] But I think definitely the intent is to build a world-class scheme in its literal sense. A lot of countries are watching what we’re doing and watching us make the mistakes. So we are making mistakes for everybody else. And they’ll probably take it on once the model is nicely wrapped up in a bow one day. We are doing something quite significant and hearing a lot of the teething issues does improve the processes. They can’t improve any other way. So, yeah, I’m very optimistic in terms of the long-term significance and quality of the scheme, and as the scheme matures as well, we’ll see it, a lot of things improve naturally by the phase of maturity itself, but also by actual intentional process improvements within the agency.
BLANCHE: I remain cynical.
GEOF: You express your cynicism.
BLANCHE: [Laughs] Yeah, I’m really concerned about where the spending is going to go and where the not spending, when we have allocating funds that are not being used. I’m concerned that there is not enough sharing of information of what is available and what the good case scenarios look like. I was in Busselton and Bunbury when it was rolled over in WA and I was more optimistic when I was hearing about what it was all about before I had seen the practicality of what it looks like at the moment. I’m scared.
JAYDE: I am choosing to think that as we go through, the more people, like Bronwyn, share her experiences with others and we all work together in pre-planning and preparing participants to get the best, that in five years’ time there is a lot more education out there. If the NDIA continues to engage as they have and said they are going to continue do so, it should be a lot better than we’re seeing now.
ALICIA: I feel very optimistic about it. I think it is an exciting time and I think it’s amazing that Australia has even got this scheme available to our population. So I feel very positive and I think we just need to get through this transitional time and take all those learnings. We are the last state in Australia to roll out. So, hopefully, we can take some learnings from over east as well and get through it faster than they did.
GEOF: We’ll wrap it up there. Ladies and gentlemen, please thank the panel. [Applause]
BARRY: Thank, Geof and panel. To give a vote of thanks, I invite John Byrne who is our Treasurer. John, as he said, has been profoundly deaf from a young age. He’s an outstanding Australian. He’s academically well qualified and is in fact now the Equal Opportunity Commissioner in Western Australia. Full strength to his arm, he would like to give the vote of thanks to our participants. Thanks, John. [Applause]
JOHN: I would like to thank the panel members and all the speakers today. Also I didn’t hear anybody say today NDIS should never have happened. Everybody supports it going forward as far as I can see. As always, there are teething problems, but I’m personally very optimistic and I think it is a great initiative for all people with disability. I would like to thank the panel.
Also, events like this require significant organisation and I would like Julie to come forward. I have something for Julie. [Applause]
Julie puts a huge amount of effort into these events; it is almost invisible. But it is a huge amount of effort. I would finally like to help Barry McKinnon. He’s an absolute star. I have worked with Barry for many years. I say about Barry, he gets things done. He puts a lot of effort into things and he gets things done. We have a great fortune in Western Australia to have Barry McKinnon helping us with hearing impairment and deafness issues.
BARRY: Thanks, John. To wrap it up, can I say a couple of things. Firstly, we started off today, and the theme early on, which has gone through it, I think, it’s not just the NDIS, which is an important initiative, but there are a lot of services outside that that you may be able to access that as well. With the respect to the NDIS, I think the messages that have come out clearly as part of the Q&A, and I think we all acknowledge this, as the NDIA would–– that is, the planners within the NDIS need to have knowledge. Part of our job is to ensure that the knowledge is imparted to the planners, to ensure they understand what is available and what the disability is about. That is no mean feat given the range of disabilities around. Secondly, it’s ensuring––I have repeated this several times––that people accessing the NDIS have the knowledge to do so and the ability. Many people haven’t got that ability and they need the support to do that. Thirdly, and I think this has come through and that is why I asked the question about the guarantee––the timeliness of decisions. That is really important, particularly amongst young people, but not just for young. It is important that decisions are made properly and appropriately. And, finally, I think Jayde mentioned it and other people mentioned it several times, that in service delivery, in disability, it’s rare that it’s going to be the one provider. There needs to be collaboration across the board to ensure it’s effective.
The only final comment I would make would be that––and I heard what Bronwyn said, and with all due respect to the NDIA and the people, in terms of them getting information about where to go for the future, having been involved in all these businesses for quite a long time, it’s quite easy for government organisations to get advice from professional associations––piece of cake. To get the information from parents is difficult. I can tell you as a parent, the best information we ever got about what we needed to do for our son was from other parents, with all due respect to Karen and the people at Telethon who were there at the time; they are fantastic people. But the best advice you get as a parent as to what to you do with your kid is from another parent. I urge the NDIA––it’s harder to get that information from parents but please try to get the message back to your bosses to get the advice from professionals–– they are very important––but make sure you listen to the parents in the process. That is just my personal opinion. That is me off my soap box.
The final comment I make today. Thank you all for your attendance. Thanks to Julie for her organisation. We couldn’t do this without you, Julie. And to all the other people who have participated today.
And the final comment––they hate me saying––but thank you to the interpreters. [Applause] They have done a great job, not just the Auslan interpreter, but Geraldine and the professional audio people at the back. It makes a huge difference [Applause]. I don’t know about anybody else here, and this is patting ourselves on the back, but I don’t go to any function, almost, that involves deaf and hard of hearing people that is as well interpreted as this one. It’s well done and we appreciate it very much. Thank you. Have a good day and I look forward to seeing the Dockers win this year. [Applause]