DANIEL KYRIACOU:
Good morning, Western Sydney and the Blue Mountains and welcome to the Every Australian Counts NDIS kick-off event. For everybody here, this is your campaign and your event, so make yourself feel at home. My name is Daniel Kyriacou. I am the General Manager for Communications for National Disability Services, the peak body for disability services across Australia.

With our partner organisations, Carers Australia, the peak body representing carers, and the Australian Federation of Disability Organisations, AFDO, who represent people with disability, we launched the Every Australian Counts campaign in 2011. Today is a massive milestone for us and all of you as the journey towards the NDIS has taken one more giant leap and a leap that we can all be proud of.

I would like to thank the people with disability, carers and service providers who’ve made the effort to be here with us today. Give yourselves a round of applause.

But we are not alone. I also want to thank the thousands of people with disability, carers and service providers, and supporters of the Every Australian Counts campaign who are watching us live right now over the internet, let’s also give them a round of applause from Sydney.

The campaign for the NDIS was about transforming lives. It was about rewriting the story and the experience of the people with disability and their families. It was about making every Australian count and I want to ram home the fact that today is a day that we made happen.

This next session is where we get into the details, where we aim to give you a better understanding of the NDIS, and we do it with an extra challenge ‘cause I look out of the corner of my eye at David Bowen, the Chief Executive of the National Disability Insurance Scheme, is in the room. So I guess he will flag to me if, when we explain how the NDIS works, we get it a little wrong. Or maybe, given there are so many of us, he might just have to adapt the scheme to work however we explain that it works.

Ladies and gentlemen, we’ve invited the Every Australian Counts Team to come up here on stage and talk you through how the NDIS works. We’ve been doing this since 2011. In fact, we were explaining how the NDIS might work well before there was such a thing as an NDIS. So I hope we’ve got the answers to the questions you want to know.

I’m very proud to welcome part of our team, Katherine McLellan and Andrew Gibson, to talk you through how the NDIS works and I’m excited because they’re going to be joined by a bunch of special guests from the Hunter who have real life experience and can tell you what they have experienced already being part of the NDIS. Let’s give them a massive round of applause.

KATHERINE MCLELLAN:
Thank you, Daniel. Hello, my name is Katherine and this is Andrew and we are part of the Every Australian Counts campaign team and part of our job is that we travel around the state talking to groups of people who are going to benefit from the NDIS, but I think it is pretty safe to say that we have never spoken to a group of people this big, so if you could just indulge us for a second because we kind of feel like rock stars and we’re just going to do this. One, two, three.

ANDREW GIBSON and KATHERINE MCLELLAN:
Hello, Penrith!

KATHERINE MCLELLAN:
You’re all looking pretty good. It really…

ANDREW GIBSON:
We’re not that cool.

KATHERINE MCLELLAN:
We’re not that cool, but that’s fine. But it is really great to look out here and see so many of you, so thank you for making the effort and taking the time to come and listen to us here today. It has been a long, hard fight to get this place. It has been a great fun and joy to work on the campaign in this team and isn’t it exciting that we can say two years ago today, the NDIS did start rolling out around the country and today it’s here in the Blue Mountains and Penrith areas? That’s really… It is really a great excitement for us.

Thank you, everyone who did send through your questions. Andrew and I have done our best to answer all of those questions in our presentation, but because we do have such a big group with us here today, we are not going to be doing Q&A from the stage and so what we’ve done instead, is we’ve invited a whole lot of staff from National Disability Services and also My Choice Matters. We’re going to get those guys to give us a wave, they’re kind of hanging around on the outskirts of the group.

ANDREW GIBSON:
Look around, they’re on the outside.

KATHERINE MCLELLAN:
So, they’re all here today and we’re going to be sticking around at the back of the room after we’ve finished the formal presentations to answer your questions. So please come and have a chat with us. We can get more into sort of the specifics of what the NDIS is going to look like for you and for your family.

We’ve also put together this booklet which is NDIS: Your Questions Answered. It’s got stacks of information in it and also a whole lot of contact information for where you can go to get more support and when we’re finished speaking, our ushers are going to hand that out for us. So, with that I’m going to hand over to Andrew and he’s going to get us underway.

ANDREW GIBSON:
Thanks, Kath. Everyone’s been saying it, what an exciting day! The launch of the NDIS. It is the first rollout site. A lot of hard work by a lot of people for a long time to get to this day. Everyone’s been saying it, but it’s a celebration, we all know it and I’m proud to be part of this launch. It’s a scheme that’s going to transform lives for a lot of people in this room. Things are not going to be the same or as they have been. It’s an exciting thing.

As Dougie told us earlier, the scheme, why we need the NDIS. The system’s broken. It hasn’t been working and, as he pointed out, it’s unfair, unfunded and people in this room, who can relate to it? Inefficient services, services not there, waiting lists. I know myself, I waited for a wheelchair once for four years. Who can relate to this, hands up?

No-one’s had… Really? No-one in the room has been waiting for services? No?

KATHERINE MCLELLAN:
There are some hands coming up now.

ANDREW GIBSON:
Yeah, come on. We know we need this scheme. But the NDIS is going to turn all this around and the changes from block funding to individualised funding, person-centred approaches. Basically, it will mean a change from the State government around the nation funding disability services and supports to give you what they can, to the Federal government funding the individuals to choose services and supports they want. That is the massive change, so we’re all going to have to get our heads around it.

Choice and control, targeted support. So, what you want in your life when you need it, not waiting for things, not applying endless assessments, having to do that. One entry point into the system for the rest of your life and then you choose what supports you get. It’s going to be an amazing thing that’s going to turn around lives.

More people, more support, more choices, more for your family. There’s been great feedback from the Hunter trial site that’s been going for the last two years. We’re going to meet some families later, but there have been issues and we are learning from them. The Agency’s learning from them, the governments are learning from them. It’s a new thing that were all forging and we have to learn how to do it properly, we have to make sure we get it right.

We have to make the scheme be the best it can be, fulfil its potential, and fulfil all our potentials. We’ve got an opportunity here to… Well, not take on the world, but just to do whatever we want. So, let’s get into more detail. Katherine’s going to talk to us about eligibility.

KATHERINE MCLELLAN:
So, who is going to get an NDIS package? Who exactly is the NDIS for?

Something that I really want you to take away from today is that right now, across the country, there are around 220,000 people receiving disability supports. Under the National Disability Insurance Scheme, that number is going to grow to more than 460,000 people. That’s more than double. That’s a huge number of people.

ANDREW GIBSON:
More people, awesome.

KATHERINE MCLELLAN:
So we know that a lot of people are going to be successful in getting an NDIS package. But there is a set of eligibility criteria. So, firstly, you do have to have a significant and permanent disability. You have to be an Australian citizen or permanent resident and you have to enter the Scheme before the age of 65.

Now, that doesn’t mean that when you get to the age of 65 you lose the NDIS, once you’ve got it you’ve got it for life. But you do have to enter the Scheme before the age of 65. And it’s not means tested. So, if you’re receiving a disability support pension or if someone in your family’s receiving a carer’s payment, that won’t effect it at all.

And the NDIS is needs tested. There’s not a set of criteria or a list of disability diagnosis’s that either include or exclude you from the scheme. It’s all about – what does your disability affect? How does your disability affect you? How does it affect your ability to access the community or access employment and what supports and services do you need to live your life to the full?

Now, of these 460,000 people that will receive an NDIS package, I guess there’s two schools of people. Those that have already been receiving government-funded supports before through your state government systems, and if you’re in that pool of people, when the NDIS comes to your town or your suburb, it’s going to be a smooth transition. You will be contacted by the government and they’ll get you involved in a planning process to see that you’re eligible and move you into a planning process to get a package for the Scheme.

But the reason that the number is growing so much to 460,000 people is that the government has recognised that across the country there is a huge level of unmet need. That people with disability have been missing out on access to supports and services that they so desperately have needed. So, the government has recognised the unmet need and they are responding to it through the NDIS.

So if you’re here today and you think that you would benefit from an NDIS package and you can sort of see that you are eligible for it, but you haven’t been receiving government-funded supports before, the best thing to do is that when the NDIS comes to your local area, to your towns or suburbs, that you go and visit the NDIS offices.

Now, they’ve been popping up around Australia in our trial sites and plenty more of those offices will be there for you in the future, and they’re like shopfronts, like we have Medicare offices that we can go and visit. You’ll be able to go in and visit an NDIS office and have a conversation with a planner.

Now, to get a little bit more specific into the detail about the 2000 places that are beginning from today in this local area. To be eligible for those 2000 places, you have to live in either the Penrith, Hawkesbury, Blue Mountains or Lithgow local government areas. You need to be aged 0 to under 18 and benefit from early intervention. So, early intervention is putting services and supports into somebody’s life as early as possible, recognising that that will allow their future possibilities and their future life to be better. That the difficulties they face in the future will be lessened because of early intervention.

The 2000 places is also for children aged nought to six with a developmental delay. So, if you are here today and you think that your child or young person that you’re caring for does fit those eligibility criteria, then the best thing that you can do is to visit your local NDIS office. Now, the local NDIS office in Penrith did just open this morning at 114 Henry Street, and we’re not suggesting that 500 of you go and head there this afternoon…

ANDREW GIBSON:
600.

KATHERINE MCLELLAN:
..because I think they’d be a little bit upset with us.

ANDREW GIBSON:
700.

KATHERINE MCLELLAN:
But take your time. Over the next few weeks, head on into that office and start your NDIS journey by having a conversation with one of the planners in that office and make sure that you tell them the Every Australian Counts campaign team sent you.

Now, if you are not from this local area, we know that you are still waiting to hear about when the NDIS is going to come to you and the campaign has, you know, really worked hard with talking with governments to get them to release the information and it’s great that the New South Wales government has committed to releasing their full implementation rollout by the end of August this year. So, in just two short months we will have the detail for when it’s coming to every person in New South Wales.

If you’re somebody who’s watching online through our streaming from around the country, we are also committed to working with all of your State governments to get those rollout plans finalised. As Dougie mentioned earlier today, what we know is that the NDIS will be there for every Australian who needs it by the end of 2019. So, we know it’s been a long journey and that you’ve all been waiting a long time. It’s great that some of you will be in this next amount in this full roll-out, but for those people that are still waiting, the campaign team is committed to getting you results and we’ll keep working with all of our governments.

So, once you’ve determined your eligibility for the scheme, the next step on the journey is the planning process. As Luke mentioned to us, there’s nothing more important than prepare, plan, prepare and plan. So, Andrew’s going to give you some detail about how you can get preparing.

ANDREW GIBSON:
Thanks, Kath. Perhaps the biggest thing about the NDIS is thinking about what you want your supports to be. Not just day-to-day supports and the options that gives you, but long-term plans and goals for the future. That’s the big difference. Not just living the day-to-day what we can get, what’s happening this week, next week, but long-term goals and plans.

It is about improving the quality of life, long-term. Early intervention, we all know, early intervention’s what’s going to pay off and this is a lifetime plan. If kids… Well, starting from today, how’s that going to improve their lives 10, 20, 30 years in the future? It’s going to be amazing.

So, that’s the big turnaround. Rather than the supports you can get to do what you have to, it’s the supports you want that you choose to. It’s an amazing thing. It’s big picture. It’s not only getting through the daily grind and the frustration but having long-term goals, what this could mean. What do you want to do? Education, employment? It’s the big picture, long-term.

This takes… As Luke told us earlier, this takes planning and preparation. It’s vital, so where do you start? Start thinking about the supports you currently have in your life. As I was saying, day-to-day needs, what you might need to get through each day, personal care, support from day programs, whatever you need. And that is the big picture, not just the one service you use, but what you do over the course of a week, the course of the month.

Design your plan. You have to prepare. What goes into your plan will be what you get. And you are the experts in your own lives. I tell you, think about everything that you would like to have in your plan before you go and meet the Agency. The Agency have a lot of tools on their website to help you with the planning. As I said, you are the experts in your life. You need to go and see them with the ideas of what sort of supports you want. They’re not going to tell you. As I’ve been saying, the big turnaround. You decide what you get, you are not going to be told what you can have.

So, a lot of preparation and planning, what you want to do with your future. And it’s, yeah, long-term goals. A lot of us haven’t had the chance or the opportunity to think about that in the past and that’s where everything changes and we get supported to be included and participate in the community. Every time I say that, I just think, wow, we’re improving the quality of life of a lot of people in this room for lifelong. It’s an amazing thing.

As I was saying, the agency has a lot of tools on their website, but planning is the big thing. The next step is creating your plan. The plan is designed to transform your life. As I was saying, independence, increased capacity, ability, you know, get ready for school, that’s what we’re going to hear about soon. You know, what do you want your plan to do? And that’s the thing, everybody’s plan is going to be different. It’s not about one service or one program, people fitting into that, it’s what do you want your plan to do for you? And what supports do you need to achieve this? It’s an amazing thing.

The NDIS funds reasonable and necessary supports, well, to help you reach these goals in a number of areas. For example, help at home, personal care, education, employment, social participation. Reasonable and necessary supports, Kath will explain more about that in a minute. For example, the NDIS would not pay your school fees or your tuition, but may help you with a support worker for personal care while you’re at school. We will give other examples, but think about the possibilities. This is exciting stuff that’s going to change lives.

The second step is the actual planning. As we were saying, look up the tools on the website to help you design your plan because none of us have done this before. The Agency’s learning, we’re learning, services are changing, we’re all in this together, so get as much information as you can. Or you can ring them or you can go and see them at the new office in Penrith, Henry Street. Probably not today, but maybe soon.

When you meet your planner, there’ll be an assessment of your needs and your goals. These ideas you have for your future. And then you’ll design your plan. It’s not a one-off meeting, you know, you’re designing a plan for the rest of your life, for the next year, it’s a complex thing. It’s not a one-off, right, tick, done deal, there you go. There’ll be things you haven’t thought of that the Agency could help you with. It’s a long-term plan.

As I was saying, it’s individualised, it’s for everyone else. It’s for everyone else? It’s individualised. Everyone’s plan is different. And you can see and review your plan before it is finished. It doesn’t get signed off without your approval. You are choosing what you want to do with your supports and your life. It’s not a one-off, either. It’s flexible. If things change with you, your plan will too. But Kath will tell you more about this.

KATHERINE MCLELLAN:
Alright, so, as we learnt earlier, right now there are just over 13,600 people across Australia in our trial sites receiving a package, an NDIS plan and package. And of those people, 95% are rating their satisfaction with the NDIS as good or very good. We are… We are really encouraged to hear those numbers because what that tells us is that the NDIS is improving life outcomes and that’s what it’s all about. Largely, this is due to the increased choice and control which people have under the NDIS, and so this is excellent. We’re really pleased to see these numbers.

So, when you’ve gone through your planning process and you’ve got your plan, your individual plan with a package of money, what then is available for you to buy? Well, Andrew went through some of those and we’ve got a pretty good list that will be handed out to you in this booklet, but essentially, everything that is available as disability supports and services now, is available for you to purchase under the NDIS.

It’s just going to be a lot more flexible in what you purchase, how often you purchase it, how much you purchase and who you purchase it from. So, that’s up to you, that’s why you’ve got the real power, the choice and control over what is in your package.

Now, Andrew told us the terms “reasonable” and “necessary”. Now, what does that mean? Essentially, the NDIS is not going to buy you a car but the NDIS will provide the necessary modifications to that car so that you can use it to access the community or get yourself to work. The NDIS isn’t going to give you a job, but it will provide you with the employment supports or services that you need to find a job, to keep that job. So that’s what reasonable and necessary is, but again, when you meet with the Agency’s planners, they’re going to have a lot more information and help you really think about those sorts of examples and what will be reasonable and necessary in your own plans.

Now, the crucial thing that we want you to know as well today is that if everything is actually going quite well in your lives and you’re happy with the supports and services that you’re receiving and you’re really happy with the service providers that are delivering those supports and services to you, then your life doesn’t have to drastically change. That’s not what the NDIS is here to, you know, disrupt your life. If things are going well, what can really happen is where the funding comes from is going to change, that you’ll still be assessed and put into an NDIS package, but your supports and services don’t need to change and your life can remain the same.

But the beauty of the NDIS is that if you’re not happy with the support and services that you are receiving or you’re not happy with the people that are providing you with the supports and services, then you can change really quite easily. So, if you’ve been in a day program for 15 to 20 years because you were assessed as ineligible to work, but you’re really desperate to give employment a go and you haven’t had that flexibility up until now, put that in your NDIS plan and package, that you want to try employment and it will give you the flexibility to do that. And you might secure a job from it, part-time, full-time, casual, or you might not and you can go back to the day program that you were in before. So, it’s about giving you opportunities to try things but allowing you to know that there’s a security there of the supports that will still be available to you.

If your child is receiving speech pathology, but the current speech pathology services that you’ve got access to are more than an hour’s drive away, then with your new NDIS plan, you can change providers and somebody will provide that service for you in your own home at a time that’s convenient to you and to your family. So it’s really about opening that up to your opportunities and possibilities of what you want for your life, for the child that your caring for and also too, as, you know, Luke mentioned, family’s really important as well. So, what is convenient for you and for your family?

Now, we did mention before that the great thing about being in New South Wales is that we have been the forefront of the NDIS. Thanks a lot to our New South Wales government for that. And we’ve had an NDIS trial site in the Hunter, now in operation for two years and we’re really thankful that we have some families here with us today and also an advocate from the Hunter region. So, they’re going to join us on stage now and were going to ask them a few questions and they’re going to really give us the personal insights and experiences of what it’s like to have been a very early NDIS participant. So, give us a minute now, we’re just going to welcome them on stage and get them seated.

DANIEL KYRIACOU:
While they’re getting organised, I’m going to check that you’re all awake one more time. I can report, pretty excitingly, there are a couple of thousand people watching online. But there is one person watching online in New Zealand, and I would like us to see if we can make so much noise that they can hear us all the way here from Penrith. So when I say NDIS, like last time, let’s give it a massive roar. One, two, three, what do you say?

CROWD:
Bring it on!

DANIEL KYRIACOU:
One more time, let’s go?

CROWD:
Bring it on!

DANIEL KYRIACOU:
One third time, let’s go.

CROWD:
Bring it on!

DANIEL KYRIACOU:
Fantastic. I think were almost ready to go, so let’s see if we can kick off.

ANDREW GIBSON:
Thanks, Daniel. Please welcome from the Hunter trial site Jane and Molly. Hi, Molly. And Shae and Nell. Willow’s not going to come up on stage with us, that’s OK. Willow’s down there. Hi, Willow. Oh, it’s OK. Jane and Julie, have both been in the plan in the Hunter for… It’s your second year in the trial?

JANE:
Yes, Andrew, hi. Sorry, this is a bit weird speaking on a microphone.

ANDREW GIBSON:
It’s OK, it’s a roomful of friends.

JANE:
Yeah, that’s right, that’s right. Yes, this is… We are currently in our second year. Our plan was reviewed at the end of April of this year, so we are just now in our second year.

ANDREW GIBSON:
OK, tell us about your planning experience.

JANE:
The planning meeting was actually very easy. We were under the care of the Paediatric Brain Injury Rehab Team and we just made an easy transition to the NDIS through their recommendation. The therapy support that Molly could strongly benefit from was more than what P-BIRT could provide and the NDIS trial was in the Hunter, so they said lets jump on board.

ANDREW GIBSON:
Great, so, yeah, more support.

JANE:
Definitely, definitely a lot more support. So, a lot more physio, OT and speech therapy, and in a transdisciplinary package and then there’s been some extra things as well.

ANDREW GIBSON:
Great. And Janelle, how did you prepare for your entry into the scheme?

JANELLE:
We had the initial meeting. I had done the initial form online. Had a meeting, took in my reports and so on, and then another meeting with the plan, but I kind of knew what I wanted all along. I just wanted Willow to be able to catch up and not be behind like she has been. So, yeah, I knew what I wanted, we needed help with the OT, the physio, the speech especially, just so she can catch up and keep up with the kids at school.

ANDREW GIBSON:
And, um, what’s sort of in your plans? You’re now into your second year, you’ve had the review, so did you change supports, was there more or less?

JANE:
Basically, I mean, when you first have the meeting it’s very much about the planner talks to you about what are your goals? What do you want? And when you’re in your day-to-day life, it’s not that you have a struggle mentality but the day-to-day existence doesn’t tend to lead you to that space of thinking of goals, so that can sometimes be the hardest thing. It’s like, OK, what do we really want for our child? And for us, we wanted just Molly to experience the simple, joyful pleasures of being able to swim unaided and ride a bike like her brother. So, we started with that and then, of course, the planner was able to talk to us more about how we could achieve that.

ANDREW GIBSON:
Yeah, and how about you, Janelle, in your plan?

JANELLE:
Initially, it was all speech because she’s got a severe speech problem, so communicating with others. Behavioural, as well, that was in our first plan in the first year. We did change that so we could concentrate more on her getting ready for school. We needed to put the effort into her strengthening her low muscle tone to get core strength there so she can sit still, concentrate and listen with the rest of the class. Behavioural, I said behavioural I suppose. It was mainly speech and muscle tone at that stage. We did have a behavioural, like I said, in place. I’m just repeating myself now.

ANDREW GIBSON:
It’s OK.

JANELLE:
But yeah, this year we’ve got more goals set for coping with school. We’ve still got to work on the speech. It’s just keeping her up with the rest of the children. Yeah.

ANDREW GIBSON:
So, you seeing big changes in your life?

JANELLE:
Definitely, Willow’s grown heaps. She has grown up a lot and with communicating, she still has to do a lot of work on that.

ANDREW GIBSON:
Yeah.

JANELLE:
No, the teachers are quite proud of her at school. We’ve got a lovely little school with the best teacher, so they put in a lot of effort.

ANDREW GIBSON:
Sounds like things are good. And, Jane?

JANE:
Andrew, the improvements in Molly have just been out of this world. So, for example, when we first started with the package, we had the assessments. We were under the provider of the Cerebral Palsy Alliance and they did assessments on Molly and I always thought that her speech was quite good. So, even after the brain injury I thought that’s something that’s got quite good, but the speech therapist said we’ll do an assessment on her and, surprisingly, she came up deficient in all areas.

So we went ahead with speech therapy and she is now age-appropriate, so the early intervention has just been phenomenal for Molly.

ANDREW GIBSON:
Fantastic.

JANE:
And something which really was quite a moment that touched my heart – she was always… You’d talk with her and then she would always go off. You’d have her for a second and then she’d go off onto these little tangents and initially we thought, oh, that’s so cute. But it kept going, it kept happening.

And then in the assessment, the speech therapist revealed that she was actually not understanding the concept. So she’d actually missed some of those developmental concepts when she was healing and that simply all we needed to do was to fill in those gaps and then, all of a sudden she didn’t do that, going off into tangents anymore. So, she is able to understand me a lot more. I mean, you can’t express how much that actually empowers your life and how much that changes a family situation.

ANDREW GIBSON:
Yeah, and that’s the thing. Yeah, the plan’s not just about the individual, it’s about the whole family. Molly’s brain injuries, you know, focus Molly.

JANE:
That’s right. That’s right. And we have our son, our older son, Shae, and of course it everything was surrounding…

MOLLY:
Yes. Yes.

SPEAKER:
…Surrounding about Molly, then it does, it becomes very stressful because, you know, he deserves as much attention as what she does.

ANDREW GIBSON:
Yeah.

JANE:
You want to say hello, say hello.

MOLLY:
No.

ANDREW GIBSON:
And, Janelle, what are you excited about the future? Willow’s doing really well at school… Yeah, what…

JANELLE:
I always thought there is a purpose. There is a purpose and I’ve got a positive outcome for all of it. You just see her doing things day to day and you think, you can see Willow doing that when she grows up, you know. You just want her to be able to support herself. And, um… Yeah, we won’t be here forever so, you know, she needs to learn and be able to support herself in the future and I can see that definitely happening.

ANDREW GIBSON:
Yeah, great.

JANE:
I guess mine is seeing Molly thrive at school and thrive in the pool. Our focus, one of our things we wanted for Molly is for her to be able to swim unaided because it’s just so beautiful to feel your body moving freely in the water. And if there is any advice I can give on therapy, which is so hugely valuable, is swimming. Particularly for children, the therapy has to be something that they’re excited about and that doesn’t feel therapy-based and at times when OT has not… She’s been resistant to OT or resistant to physio, we’ve been in the pool and she doesn’t know that she’s actually doing therapy and it’s just improved her muscle tone. It’s just out of this world, yeah, so, yep, so we’re looking forward to that being her sport.

ANDREW GIBSON:
Yeah, thank you for sharing your stories with us.

KATHERINE MCLELLAN:
We also have with us today Katherine Marnie. Katherine is an NDIS participant in the Hunter trial site and also works as an advocate, so has quite a unique perspective on how the Scheme is going, so we are really thankful that she is been able to join us. Katherine, could you just very briefly or broadly tell us how the NDIS has benefited you?

KATHERINE MARNIE:
Oh, sure. Before I do, can I just… I guess I was thinking when Dougie was talking about this day two years ago, I was really privileged on that day to speak at the launch in the Hunter and a lot of what I said to the people of the Hunter and thought of for myself, I guess I just wanted to wish to the people here in Western Sydney and the Nepean and the Blue Mountains, this is a great moment. I know you keep hearing it, but it really is worth celebrating and savouring. We have turned the system on its head that we know was fractured and broken and broke and it really does make a difference to lives in really big and small ways, as you’ve heard from Janelle and Jane.

It is, of course it’s going to have its moments, it’s a human endeavour so it’s not going to be perfect. I can honestly say that the positives are worth celebrating on the negatives and challenges are worth us all continuing to work on together. So, thank you to Every Australian Counts for the invite to be here.

In terms of benefits, for myself I suppose it is about choice and control. That’s something that we hear a lot about in the world of the NDIS. And I didn’t have a lot of choice and control over my support before I became a participant. So, I worked with a service that was… Where they were in control of who supported me and when I was supported and, to some degree, or to too much degree, they had too much focus on what we did with that support.

And I felt lots of restrictions, lots of, “No, you can’t do that.” “No, we can’t do that within our program, sorry.” So, for me, I knew before my first plan that what I wanted choice and control over was the who, the when and the what of my support. And I absolutely have that now.

It’s still a journey, it’s still a process, it is a steep learning curve to go from having limited control to complete control, but it’s an exciting journey, for want of a cliché, that we have to take together. Yeah, so, for me it’s about the daily things. Who it is that comes to my house, do I have a good rapport with them, do they share my values, do they see me as an equal human being to them? So, absolutely, that’s the kind of thing that I love making choices around with the NDIS.

I guess the main areas of support which I’ve received some benefits, or, you know, am enjoying some benefits in, are around some admin tasks. So, checking the mail and paying some bills and going to the bank, all that sort of stuff. It’s my preference, it easier for me to have some support to carry out those tasks. And assistance…

I work for myself, so I do use support from my package when I have to go to different places to present at things like today. So, they’re the main things I use it for but it is fantastic.

KATHERINE MCLELLAN:
That’s great to hear.

KATHERINE MCLELLAN:
And so, participation and inclusion is a big focus of the NDIS. Could you give us some thoughts on how you think people with disabilities and their families have benefited in being more included in communities and also in employment through the NDIS.

KATHERINE MARNIE:
Sure. I think that one is going to take us a while. I think we’re making small but significant steps into the area of inclusion but I think we need to be aware that we’re not there yet. And it’s going to take a long time for we people with disability to realise what inclusion really is and all the small ways in which we, the big and small ways, in which we have been excluded. Because sometimes when you excluded, you don’t know that you’re excluded.

And, so, but I certainly know of people who are leaving… They might have been in a day program or they might have been in a social employment sort of situation and they’re looking for mainstream work and they’re getting work in open employment.

So, when you have choice and control over your supports and the funding that you get, then work, we know, is a big focus for people with disability. It’s a huge area of injustice in this country, the level of unemployment of people with disability. The NDIS and the productivity report that came before it, absolutely at the heart is about economic and economic participation in our society.

We laugh but there are actually people who want to pay taxes because that’s something they’ve been excluded from. People are wanting to have… As Dougie said before, live in their own homes, choose who they live with. Some people are wanting to buy houses and have a mortgage and all those things which probably once we get, we’ll feel the challenges of, which we want because we’ve been excluded from those opportunities.

And I think, too, part of what I hope the NDIS will mean in western Sydney and continuing to mean in the Hunter and throughout the country is that the rest of the community will be supported to really include people with disability in a genuine way and that they will think beyond people with disability being in groups with other people with disability and they’ll think, wow, let’s just all do something together. Where people with disability are part of that group, but it’s not what brings us together.

KATHERINE MCLELLAN:
And Katherine, you do work as an advocate. So what is the role of advocacy in the NDIS?

KATHERINE MARNIE:
Advocacy is critical to the NDIS. I think it’s critical to people with disability and their families really making the most of this reform. Really… It’s a learning curve and it isn’t easy to… Well, I mean, I think we need advocacy in all stages, so, when we go to make that first plan, we have a fantastic opportunity to ask ourselves new questions. We don’t have to focus on deficits and diagnoses any more.

We can say, not what do I need, but what do I want? And we can dare to dream and we can dare to imagine. But that takes some rethinking and it’s hard to shift our own values. So it’s really important that we have, whether it’s an official advocate, whether it’s a friend over coffee, it’s really important that we have conversations with people who believe in the potential of people with disability to live different lives, better lives, more included lives.

Then, when you get to your planning meeting, that can also be quite challenging. I found it quite an emotional experience and I thought I was ready to go. And it’s hard to talk to a relative stranger about the parts of your life that aren’t the way you want them to be, that aren’t working the way you hoped they would work.

So, advocacy is really important when you’re having that hard conversation with your planner. Then, as Luke said before, comes the whole issue of implementation. You’re given your plan and off you go or, if you’re me, you kind of don’t go. You stop because you’ve got all this new choice and control and not quite a clear sense of where to start.

It’s really important that an advocate, whether it’s a peer, mentor, or whether it’s a… There’s lots of organisations here today whose role it is to help people with disability learn to do this stuff for ourselves. So, it’s really important that you have someone in that journey as you go to implement and maybe choose new workers or choose a new service to access or put all of those dreams into action.

And then I think it’s important that you have an advocate to review with you. You know, most of us in life don’t do these big things on our own so it’s just as important, it’s more important, when we’re taking on a whole new system and a whole exciting shift in culture and values. Why wouldn’t we have an advocate?

KATHERINE MCLELLAN:
Excellent.

KATHERINE MCLELLAN:
And finally, Katherine, can you just tell us what you excited for in the future with the NDIS?

KATHERINE MARNIE:
Oh, for myself?

KATHERINE MCLELLAN:
Yes.

KATHERINE MARNIE:
Oh, OK. Um, well, I’m into my second plan so it’s really early days, but I’m excited because I’m noticing in my second plan that my goals aren’t so disability specific. They’re things like…

They’re really typical goals. I might have some particular needs or, as a colleague of mine likes to say, the support is the bridge that will help me reach those goals but it’s not the goal within itself. So, for me, my current goals that I’m excited about, in my first year of the NDIS I moved into my own home for the first time at 44, don’t tell everybody.

And so, I’m still trying to make sure there is always food in the cupboard. So, one of my goals this plan is to have a home that’s welcoming and hospitable and when people call in I can offer them more than toast and vegemite.

And it’s about mental health and well-being and feeling good about my life and feeling good about the contribution I’m making and having the support I need to make that contribution. So, they’re not too disability specific, they’re pretty typical human being kind of perspectives.

And I haven’t thought… I guess I’m taking it one plan at a time and that’s something I would recommend. It’s really important that you go in with a bit of a clear vision, or a dream or whatever word you would like to use, for your own life. And that’s… I’m not naturally a person that plans and so I’m still learning to really make the most of this whole new way of thinking about myself and my world. And I’m really excited for you guys in this region as you take on this new adventure with its challenges and its joys.

KATHERINE MCLELLAN:
Great, thank you.

KATHERINE MCLELLAN:
I really like that phrase, “Just take it one plan at a time.” Have a go, see what’s working and then it’s up to you when you want to go and revisit that plan and make those changes and that’s such an exciting part of the NDIS.

KATHERINE MARNIE:
And – sorry, Katherine – just to say, as Daniel’s been saying all morning, we’ve got to keep making noise. We’ve got to keep… We’ve got to keep raising concerns when things aren’t feeling right, when the plan isn’t going the way we were hoping, so that we can all make this reform as good as it can possibly be for ourselves and our peers with disability and families.

KATHERINE MCLELLAN:
Thank you, Katherine. Thank you, Janelle and Jane, and their children as well.

KATHERINE MCLELLAN:
It’s just excellent that they were able to join us today to share those insights and they will be sticking around for a little bit just for now, so if you do have any sort of questions for them, come and find them and I’m sure they’d be very happy to talk to you.

The Every Australian Counts campaign is committed to delivering you the best NDIS for the most number of people across Australia and so that’s why we are still here, that’s why we are still campaigning, that’s why we still exist. We’re here for you and so please, do keep engaging with us and letting us know how we can best support you, our supporters.

So, thanks very much for having Andrew and myself here with you today. If this session – I’m sure it has – raised some additional questions for you, so right now our ushers are handing out our question and answer booklet, so they will be coming to you very shortly. Make sure you grab one of those before you leave today. Lots of information and also, as I mentioned, contact details in there for you about additional places you can go to receive some more NDIS support.

And we’ll all now be kind of heading to the back of the room ready to come and have some conversations with you, so thanks very much.

ANDREW GIBSON:
Thank you.

DANIEL KYRIACOU:
Let’s give them, Katherine and Andrew, and the families and advocates on stage a massive round of applause.