Transcript from panel discussion: Exercising choice and control

Transcript from panel discussion: Exercising choice and control

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.