Transcript from panel discussion: Exercising choice and control

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Transcript from panel discussion: Exercising choice and control

Facilitator: Kay McGrath

Panel members: Siobhan Daley, Sharon Bourke, Narissa Wilson

KAY MCGRATH: Now, we have three lovely ladies on   well, four lovely ladies counting Cornelia who are joining me this afternoon for this panel session.

We have all heard and we are familiar that the NDIS is a new way of providing support services. Here in Queensland, your life, your child gives people a chance to exercise that greater control. That's been in since July last year.

Now, we are going to hear from these three lovely ladies who are living the experience. They are using their power. Many of you will have heard some of them in the concurrent session, Sharon and Siobhan particularly. Siobhan is from the Hunter area trial site in New South Wales and Siobhan is going to share some of her experiences. I am very keen to hear more. Narissa, beside me here and Sharon, are from Queensland and they are self directing their supports through the Your Life Your Choice program. Sharon self directs for her gorgeous son, Dan, who is 25. So we are going to hear about three really interesting experiences.

So let's get the ball rolling because I am mindful of time. I will throw it over to you, Siobhan. Tell us a little bit about yourself.

SIOBHAN DALEY: Hi, my name is Siobhan. I am your typical 14 year old girl. I live in the Hunter launch site in New South Wales. I have been self managing for about six months. I am at Year 9 at school. I do well in many subjects. My hobbies are Facebook, listening to music and hanging with friends. I have an absolute passion for writing and playing boccia, which one day I want to be playing at the Paralympics.

KAY MCGRATH: Beautiful, thank you, Siobhan. I think Siobhan is aiming for the 2020 Paralympics in Tokyo, so don't be at all surprised if she pops up there.

Now, Sharon, can we hear a little bit about you and Dan?

SHARON BOURKE: My son is Dan, 25, as Kay said before. He's a songwriter and musician. He's unable to be here today but sort of gave me permission, with some grudging, to talk a little bit about our situation.

We are a small family and he has an elder sister who is 25 and a brother who died when he was 9. A nephew, a grandfather, and a son in law that tags on somewhere around there. We are a bit of a motley crew. I think our life is fairly ordinary; however I think Dan moves us to extra ordinary things sometimes.

The family has a strong belief in looking after each other. We belong to a small community, we belong to a community of musicians. We hold that if we are going to be good neighbours, we need to be good neighbours. Education and learning is kind of the rule around our place. Working out what you love is a bonus and Dan truly has a passion for music and I have a passion for him having a great life, but me also having a career. So his main goal in life is for me to be gone.

We try, I guess, to act according to our values and welcome people as we want to be welcomed. We have been really fortunate along our journey to have met some amazing people, some of whom are in the room today; some who share our challenge around disability supports and some who just share the passion for music and they think the disability world is a bit weird. So we try to marry those in a way that Dan gets the best life that he can.

KAY MCGRATH: Thank you, Sharon. As a mother of two boys, I can relate to that comment, Dan can't quite wait for you to be gone. We have the leader of the motley crew, which sounds like a good name for a band, and a typical teenager, and that brings us to you, Narissa.

NARISSA WILSON: I am 27 years old and I live on the Sunshine Coast with my partner, Steve. I was born and raised in the north west community of Mount Isa and once I finished Grade 12 I migrated to the Sunshine Coast where I completed a Bachelor of Information technology at the University of the Sunshine Coast. I currently live on the coast. And I am a daughter to Steve, another one, Trish, and sister to Natasha and Brett and hopefully next week an aunty to peanut, so it is very exciting. I am founder and managing director of Narie creations. I spend a lot of my time behind a computer screen so it's nice to be with people today. I have been self managing since 2009 with a host provider and we moved to the self managed journey because we trialled several different traditional service providers which I felt was very rigid and didn't allow me fully achieve my visions and goals.

KAY MCGRATH: Really looking forward to hearing more about that too. A question that I am going to ask each of our panelists: Siobhan, how has having this greater choice and control affected your teenage life?

SIOBHAN DALEY: The NDIS gives you much greater choice and control over your life. I was hardly getting any support because no one knew what my family wanted. Under the NDIS we can employ people that are happy to do some jobs around the house. Under the old scheme, they would come in to shower me but when they had time to do other things like washing, they would only wash my clothes which meant mum would still have to wash another three people's clothes. She wasn't very happy with that. Under the NDIS, we can choose exactly what sort of supports we need and not have someone picking the supports they are going to give us.

KAY MCGRATH: Yes, really important points there. Mum is happy. Mum's happy, happy girl, that's good. But the power of control, that's really a great example. Thank you, Siobhan. Sharon, I really guess we are asking you: what difference has it made, first of all, to Dan but then as a parent again, you are very much impacted, so what difference has it made for you?

SHARON BOURKE: I suppose I would describe it as a peaceful life. I see a young man who is taking more control of employing people. He is choosing who comes into his life, what role they take, and he's also worked out that you really need to stop people in your life if they are not doing what they need to do for him.

For us, it's meant that the vision or the life that we wanted is closer to normal life. Dan started receiving some sort of support when he was 3 and a bit like Siobhan has said, it was people doing basics. As we grew, Dan fitted less into conventional services. Even though we tried to choose services that fitted with the culture of our family, we were finding that as a young man, things that were dictated weren't normal. Like, you had to have a risk assessment before you just lived a regular life; that we found that the music world was so different. As I said, musicians don't really understand why a support worker would be sitting in the corner watching. So a major change started when we started following Dan's passion for music and tried to look within the music world for most of the supports he needed.

So sometimes we paid for support. Yes, Dan needs assistance to get out of bed. But a lot of times we pulled from our community, our friends and our family sometimes; and we sewed altogether, like a bit of a patchwork.

So there's nothing neat and tidy about this way of doing things but actually being in the driving seat and watching a young man also take that role and now gaining the wisdom and the responsibility that he can do it well, that certainly makes my life shine.

KAY MCGRATH: I bet it makes a big difference for you. Empowerment, but also mixed in with this, of course, what is facing Siobhan as well, that natural growing up process, that sense of maturity and being able to claim that power as well.

SHARON BOURKE: You are right, as an adult and your responsibilities.

KAY MCGRATH: Yes, let's not forget that. Narissa, how has it changed your life?

NARISSA WILSON: I think that change is a really powerful word and I feel that having self directed, three key things that stood out for me were: firstly, it has allowed me to have ownership; secondly, it's allowed me to operate in a flatline structure; thirdly, it's allowed me to have control over my privacy and confidentiality around my personal affairs. So what I mean about "ownership and identity" is that from my past experience of being with a traditional service provider, I was a number, whereas now I have an identity of "Narissa".

Secondly, in terms of operations and operating in a flatline structure, previously with a traditional service provider I was at the bottom of the food chain. So I was looking at a pyramid structure where I was down the bottom and I would have to go up the chain.

KAY MCGRATH: Is that what you mean by "flatline"?

NARISSA WILSON: Flatline is I am at the centre of the operations. So an example of that would be with the traditional service provider, if I needed to do a simple shift change, I would have to phone the service who would then refer me to a case worker, who would then phone the support worker; and then by the time the support worker had gotten back to the case worker, the case worker had gotten back to me, the support worker is already at my house and I'm not there; whereas now, instead of four phone calls, it's one.

KAY MCGRATH: That makes sense, doesn't it? So just moving on from that, Narissa, while we are on you, what has that meant you can do differently? How do you operate differently then?

NARISSA WILSON: That's a really good question. There's lots of things we do differently. So going back to that ownership is that we are   one thing we really wanted to do when we had a traditional service provider was actually meet with our team and have team meetings.

KAY MCGRATH: This is your company, your personal support?

NARISSA WILSON: Yes, my personal support. We wanted to have team meetings with my support workers and the reasoning behind that was to create some continuity in my care, which continuity is going to give me improved health. So we also wanted to have specific training in place for our support workers, which we found very rigid with a traditional service provider. So that's something that we now do regularly.

Another thing that is different for us now is that we are able to be responsive and not reactive to my care. So we are able to plan ahead in terms of crisis and think about that. But, also, I think the biggest thing that most people who have experienced self direction or are looking in that realm is that it's giving me a freedom of choice. So what I mean there is it's given me the ability to do what I want, where I want, how I want, when I want. A very basic example of that would be: I can go to the toilet when I want to.

KAY MCGRATH: I can't imagine what that wouldn't be like. Massive, massive change to your life.

NARISSA WILSON: Yeah, definitely.

KAY MCGRATH: I am so pleased to hear it. Siobhan, let's whip down to you. Now, we have heard, and a lot of people in the room are already aware of your boccia ambitions in the 2020 Paralympics in Tokyo. You are also a writer. How has this NDIS trial assisted you?

SIOBHAN DALEY: I know I speak a lot about boccia and I apologise for boring you all to sleep but it's a very large part of my life. Sorry, I should say it's an enormous part of my life. Before the NDIS, though, my mum had to be my ramp assistant because no one else could do it. I know I had my dad, but he couldn't cope. He can't even read my day to day signs. Let's face it, none of the service providers would send someone out to ramp assist because the rules wouldn't allow them to sit on a stool, which is what you have to do to be a ramp assistant. Their funding was used for community activities, so the activities were already pre picked and didn't take into account people's interests. Even if I was to employ a service provider for ramp assistance, they could never guarantee that I would always get the same person every day. Ramp assisting is a very slow and boring job and I need the same person that knows my signs, whenever I play boccia.

Under the NDIS, we employ as many people as we want to be ramp assistants, so I always have a back up.

KAY MCGRATH: I have got a 17 year old son who I think would be interested in being a ramp assistant. He's looking for a job. Just putting that out there.

I hope you are going to be writing about all of these experiences, too, Siobhan. Let's move to Sharon because I am keen because the 22 year old who does have a job, is also an aspiring musician. Tell me the difference that it's made to Dan's career prospects, to his career goals.

SHARON BOURKE: I think we move in different circles now. I think that although we have tried always to look for opportunities for Dan, we have a whole different way. I was really interested in hearing Narissa's story about support staff. We used to, before we started self directing, used to go to a service and we would tell them the days we wanted support and we would interview a few people who are very good, I am sure, at support work. Self directing has kind of led us in a direction where we really need to sit down and be clear. We have kissed a lot of toads in our lives and sometimes there's a prince in there.

KAY MCGRATH: Sometimes I can identify with that.

SHARON BOURKE: So what we have realised in that process is that it's us that have sometimes been unclear. So between Dan and I, we now describe really clearly to people what we want and what we don't want. So he does part of the interview and I do part of the interview. Dan has very complex ways of communicating and I must admit it's forced me to think about how he can do that well and I figure if they don't get through the interview because they are not prepared to take the time to listen to him in the way that he can communicates, well, they are probably not going to be around long.

We have, I suppose, jumped over the edge sometimes thinking we weren't sure about whether we were taking the right path in trying to introduce Dan to more and more musicians. So now we have probably got more people in his life who don't have a disability experience. We look for things like their attitudes, their talents; we look for what part of his life is he missing some component of. So we now employ people to the role that we need and that might seem like a subtle shift but it is actually enormous. So we train people. Like Narissa said, we spend time doing it properly. So it is not so important; people will learn how to do personal care.

When Dan went to TAFE, we looked for a musician first and then we, you know, quite bravely at the time, then asked would he be interested in doing personal care. Interestingly enough, he was a great musician but he was also somebody that was respectful and did things at the timing that my son wanted it.

So that was probably the incentive for us to draw more musicians into place. It is amazing how, if people have the will/want, they can learn complex ways of communicating. So our shift went from a fear that people may not do as well or they might hurt him in some way or somebody might laugh or ridicule him. But once we have stepped over into this other world, what we found is there's more good people than bad people and there's some exciting people out there who are musicians. Because of the fact that they are musicians, they actually live a life of difference anyhow; a bit quirky. And that works for us and our motley crew.

KAY MCGRATH: The motley crew, that's fantastic. Narissa, Narie Creations – remember that everybody – tell us how this flexibility has helped you with the business?

NARISSA WILSON: It's allowed me to be a lot more responsive and, what I mean by that, just as an example that I used earlier is that when I am scheduling my personal commitments or my work commitments, having that choice and flexibility over my life has allowed me to be a lot more responsive in terms of putting the support I need in place to meet those commitments.

Whereas previously I would have to ring and ask permission to do that; now, as one of my support workers points out to me, I am the boss. But, also it's allowed my support to be quite flowing, which has allowed me in my professional life to be efficient and effective. I just wanted to touch base a little bit on what Sharon had spoken about, about this whole journey has provided a lot more clarity in our thinking about how we operate.

KAY MCGRATH: I suspect that the three of you are a lot clearer on how you operate and what you want than a lot of able bodied people, because you have really had to sit down and nut it out, whereas a lot of us just stumble through. Siobhan, can you tell us how you prepared for the NDIS trial? What did you do? What advice have you got for us?

SIOBHAN DALEY: My biggest bit of advice I would give people going to the NDIS is you have to know what you want to do in the future, beforehand. My life pretty much revolves around boccia and the 2020 Tokyo

Paralympic games at the moment. My plan was created around finishing school, being a typical teenager and playing in 2020. Having a definite idea of my future helped in making my plan and choose the supports I need.

KAY MCGRATH: Which is developing this theme, isn't it? Sharon, Dan has to rely on you to fully understand his dreams/aspirations. That must be very important as a mum?

SHARON BOURKE: Dan might not talk but he's very clear. He uses electronic equipment, computers and a system of signs. In fact, if I can just share this little story. Dan decided probably when he was about 8 that he wasn't going to actually rely on too much electronics; that if kids wanted to have a decent conversation, he would make up his own signs. He could sign at 3 but he decided that he had this – if he made up his own, they would have to stop and listen to him. So I wouldn't dare tell him what his goals are, but we have encouraged him to be thinking and mature about what he wants in life.

I have this kind of dogged determination that if we are not clear, we will end up with what somebody else has in their head. So we do a lot of talking in our house about "what's the next step, what do we need to do". We talk about planning as a way of thinking. Rather than being a neat and tidy kind of thing where you set out your goals, a lot of the time it's about asking questions of ourselves. So if Dan wanted to go to TAFE and he wanted to study a Diploma of Music, what would it take? So this is simple stuff.

Everyone in this audience would do this daily in their heads a thousand times. It is the same process. So it's, okay, if I want to go to TAFE, how do I get there? When is the course? Who do I get to support me? And if the question always comes back to "who is the most suitable to Dan?", Dan's really clear, he doesn't want anybody bossing, he wants somebody who loves music as much as he does. He has this thing about loudness. He loves his music loud but he hates people who are loud. So when people come to interview with us, they get sorted out in the first few minutes and he has this sign which to me is pretty obvious which says I can really then ask the applicant, is there anything that you would like to ask us, because that is the end of the thing.

But the notion of setting your goals, you do have to have a direction in which you are pointed. For us, it is listening to that is really important. So rather than me coming up with the goals, it's me learning how to sit and be silent and to listen to his determinations about the future. I sometimes think it's really easy because I have a 35 year old daughter who is 10 year older than Dan and she's my practice model. If she wouldn't let me get away with anything, why would Dan? So that is the direction.

KAY MCGRATH: Thank you, ladies, I am mindful of the time. Narissa, I might ask you, if you looked around this room and you saw a bit of apprehension on a few faces, a few reservations about self managing their support and their care, what sage words of advice would you have?

NARISSA WILSON: That's interesting. It kind of reminds me a bit of the ad from the Northern Territory, promoting it, "if you never, never go, you’ll never, never know". When I was embarking on this journey, I had a lot of doubt and obviously I was very fearful. There were nights where there were a lot of tears and thinking to myself "what have I done? What am I doing?" But the morning was a new day and it was a new beginning and each day got easier. And it was about remembering that this is my life and it is now – it's happening right now in front of me.

Having choice and control is about being a self leader and people with disabilities really have a unique part in our society because we are paving the way for a better future. I feel that self direction is: if you can see it, you can direct it, you can lead it and you can live it.

KAY MCGRATH: Beautiful. Do you have anything to briefly add, Sharon?

SHARON BOURKE: Yeah, this lady on my right has said it all. But I ask people to throw away the old way of thinking and be creative. We are prior to the NDIS. It is one step at a time. It is being clear. It is understanding that mistakes will help you learn as well. Nothing in this life is without change. And using that motto. If you can see it, if you can think about it, you can move towards it. This is a lifetime journey. Certainly my son, and I believe all people with disabilities, can direct their own future. It is one step at a time, building a bridge from where you are now to a future you want. You don't have to panic.

KAY MCGRATH: Siobhan, what teenage wisdom can you add to this?

SIOBHAN DALEY: My advice to people going to the NDIS uncertain about what they want to do in the future is just think about what you would want do in your wildest dreams and then just take little steps. Sure, you won't become an astronaut, but you could do something about space. Or if your dream is something more reasonable, like moving out of home, you can do that now. You could start off by getting left by yourself at home for about an hour, then slowly make that time longer and then work up to moving out. With the NDIS, you can now do pretty much whatever you want. I wanted to do boccia and I am now playing two afternoons a week. Just get out there and have a go at whatever you want. If it doesn't work out first, you can always make changes to your plan.

KAY MCGRATH: Be flexible. Would you put your hands together, ladies and gentlemen, for our fabulous panel? Thank you for being so generous and inviting us into your lives and sharing your experiences and your wisdom. Very insightful and I am sure that everybody here has learnt a lot and is feeling a lot more confident. We have got time to leave the last word to Siobhan, who I know to be a very astute young lady. I was in her concurrent session as a number of you were and one gentleman, who I suspect has teenage girls in his family asked Siobhan who she thought it was the hottest out of the One Direction crew. Siobhan's answer was? Trust me, it's worth waiting for.

SIOBHAN DALEY: One Direction sucks.

KAY MCGRATH: And we apologise if we have offended any One Direction fans but Pink is the flavour of the month and I say hear hear. Thank you very much, Sharon, Narissa and Siobhan.

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