Read the animation transcript below:
My name is Rohan and I am 10 years old. I have Asperger’s, which is a type of autism. Having autism has affected my life in lots of ways, both positive and negative.
Before I started doing home-school I always had bullies. In primary school they made me feel like I was just a backdrop in a movie and they were the stars.
I have come to realise since then that all of my bullies were wrong. Their actions now can just be brushed off like fine dust.
I know Asperger’s makes me unique and special in ways that will leave an important mark on the world.
I have many dreams and I am so excited because the help I get will propel me towards those dreams so that I can make them real.
I would like to feel strong and healthy in my body, but my biggest heart’s desire is for people to be able to read and enjoy my stories. I want my name to be beside J.K Rowling, Steve King, Roald Dahl, Dr. Seuss and all of the greats.
Lucille, she’s a character. When Lucy was 21, she had a stroke. She was a healthy person, played sports and liked to go shopping in those times and still doing it now.
I hear a lot about the NDIS, and I said, ‘Is it for Lucille? Is it for my people?’
And then Trish, wonderful Trish, she came up and helped me with a plan and we’re acting on it now. Which is wonderful.
NDIS has given Lucille equipment and it’s made her more independent. Lucille will have all that equipment when she finally goes into her unit. That’s her dream. I don’t want my girl leaving this Earth without having fulfilled that dream. And through the NDIS, I know that it’s a possibility. It can happen.
They sent me to St Jude’s hostel. I was there two and a half years. I met a lady at the train station, and we started talking. She was from St Jude’s too. Marlene. She wanted out, and I wanted out, but we knew we couldn’t get out on our own. We had to double up to get out.
So we met Stewart and Marlene very early as the NDIS had rolled out. It was pretty clear to us what the goal was, and the goal for Stewart and Marlene was to actually move out of a hostel environment, into their own home in the community with that little bit of support they might need.
We both applied to get into the NDIS and we were both accepted. And that was the best thing we ever did.
We decided our best route was to go knocking on the doors of the local real estate. We negotiated the rent on their behalf, so advocated for a reasonable rent that we knew they could afford. One of the local estate agents came on board very, very quickly and were really keen to assist. And I think within a couple of weeks they came up with the property that Stewart and Marlene are now living in.
It does take a while to get back into the everyday life. Going to the shopping. Paying the electric bill. Paying the gas bill. It takes a while to get back into the swing of doing things like that.
So Stewart and Marlene have a number of hours each per week for support to access the local community, support to attend their appointments. Anything else that might crop up on a day-to-day basis or a week-to-week basis for Stewart and Marlene.
I’d just like to thank the NDIS for all their help. They have been very good to us.
I’ve been diagnosed with PTSD. A lot of people who are carers, parents, guardians do tend to have PTSD or PTSD-like symptoms. We have had some positive experiences with the NDIS, and I think it is something people should be knowing about. There are positive stories.
I have to admit, I was sceptical. I have had 13 years since we got my daughter’s diagnosis. But we gave it a go, you don’t find out unless you give it a go.
Luckily we were with MIFQ, who were getting to know us. They helped us with the paperwork, and all of a sudden we’re getting this support. Early stages, this is all evolving, we’ve got folks who are looking at what we can do.
One of my goals is finding a job around my daughter’s conditions, around my conditions. Not having to worry about little things, for a little bit of dignity. And getting to the point where I can look at the end of a week and going “my life, our life, is just that little bit better than it was at the beginning of the week”. This was just was an incredible positive experience. Oh, it’s…. It’s… I get speechless, but there’s no words to describe it.
Been sitting at home for two or three years and my friend, I said to him “You know, I don’t know what to do. I’m bored”. So, he said to me “Why don’t you try the Men’s Shed?”
From the time I got there, they made me feel welcome, and it’s one of the best things I’ve done in my life.
John turned up about four years ago, and he was really good. We made him Vice President the first year he came, and he’s been Vice President every year since. And he knows more about the Shed than the rest of us put together, probably because he’s here all the time.
With the NDIS, ‘cos I’ve got transport now, I’m at the Men’s Shed, but on the days I’m not I want to look for something else to do. My goal is to be as healthy as I can for as long as I can, and continue doing as much as I can, for as long as I can.
So, the Men’s Shed is my outlet. Everyone is there to help each other. They don’t look at me as the bloke in the wheelchair with disability. They treat me as anybody else there. And that’s what I do love, yeah.
We come to Kid Sense four times a week, so two sessions for speech and two for OT. What we have seen in those four years is phenomenal.
NDIS have been an enormous help. We could not do this without the NDIS.
The NDIS will mean for children in the future, not having it easier, but it will give them the best chance to start early. Therapy is expensive and the NDIS will offer people access to what otherwise they wouldn’t be able to afford.
STEWART: I’d been working twelve and a half hour shifts, doing two weeks on and a week off, and I didn’t realise that it was just too much for me. I got sick. I got bipolar disorder. It got a hold of me, and it wouldn’t let go. And I just went bang.
MARY: My name is Mary. I became considerably disabled in 2009, when I was diagnosed with cryptococcal meningitis. I was told I’d never walk again, that I’d be a vegetable, that I would eventually die of complications, that there was no hope for me. They underestimated me, I’m a tough old girl.
STEWART: I met a lady, Marlene. We both applied to get into the NDIS and we were both accepted, and that was the best thing we ever did.
DAWN: The goal for Stewart and Marlene was to actually move out of a hostel environment, into their own home in the community, with that little bit of support they may need. We decided our best route was to go knocking on the doors of the local real estate. We negotiated their rent on their behalf. One of the local estate agents came on board very, very quickly and were really keen to assist, and I think within a couple of weeks they came up with the property that Stewart and Marlene are now living in.
VONDA: We got a very good lady at NDIS. Very supportive.
LINDSAY: Well, I got Ronald, through SOLAS. Takes me here and there and helps me with shopping occasionally. We go in and visit all the geek shops. That’s the worst problem with being disabled is you tend to sit there and you think the worst of things, and you don’t think that you can do anything. I didn’t realise just what could be done.
MARY: You know, the best plan is to work out exactly what you want and put that forward. I’ve been zealous about leaving aged care. But really, I just want to…. Sort of be alive again. Now that I have the NDIS, I am moving into independent living, where I will have the help that I need and I will be able to have a future.
My daughter was only 19 when she took on the role as carer, when I came home from the rehab hospital. Prior to the NDIS, my personal care was very, very limited down to one day a week. For a shower.
Sheree’s a really great example of what the NDIS funding can do to make the difference in people’s lives. I was able to help Sheree by coming into her home and meeting with her and some of her family members, and explained in detail the NDIS. What it would support, and what it won’t support. Sheree’s goals were mostly around increasing her independence around her daily life, and making her home, particularly her bathroom, more safe for her to be able to use eventually without a personal carer.
The NDIS has made life so much easier for me. The funding has allowed me to have a shower every day. My daughter is a lot happier with the NDIS because I’m a lot more independent, and I’m getting out into the community and enjoying life again.
JOSHUA: Hey Dad.
PHILLIP: How are you going?
PHILLIP: The "Junction" project, as our families call it, has been going now for about four years. And, last time we spoke, we were at a place called "The Junction" and it was a rental accommodation. It was basically a test, or a trial project to see how the boys got on well together in the house and to look at all the problems that occur in that change.
These three young men amazed the families so much in their skills and ability to learn and grow that in June of last year we decided to take it to a final stage and that was to look to buy a house for Josh and for Michael and Fraser.
And that was successful and we're now sitting in Josh's new house in Hamilton, in Newcastle.
JOSHUA: The photos stay in there. The master bed. And this is my bed.
PHILLIP: NDIS have been really wonderful. The project coordinator, Sam, has understood our situation because I think we're a little bit different to the others, so we've got three young men who divide up the funds in equal proportions.
[Adam talks to Josh and the housemates]
ADAM: Josh really has been a bit of the glue in this household. He's always brought the humour and made everyone laugh, so that immediately disarms people. He’s a very humorous kind of guy to be around.
[Joshua chats and laughs]
PHILLIP: I think the biggest handicap that any of our sons and daughters have, are ourselves.
I find it extremely hard when I'm in the gym with Josh, rather than I drive him home, which I really loved and enjoyed doing, I now have to pull back and I allow a car to take Josh home.
TRAINER: How’s that speed? Good? Looking good mate.
PHILLIP: Because this is his independence. It's not up to me. This is for Josh's life, not my life. And at some stage, I'm not going to be here, so, I know that the skills that Josh is developing now, through me withdrawing, will allow him to have a better life when I'm not here. And, I think from parents, that's all our concern. When we're not here, how's our sons and daughters going to live and survive properly?
Don't ever think that they can't do it, because they can. They only need you to withdraw and allow them to do it.
VICKY: So, Alex started a cooking program. He decided, ‘Oh, I like baking. I like cakes.’ From there we’ve gone from making maybe one or two slices a week, now we probably make three or four cakes a week and he just continues to grow with more lessons and yeah, so he loves it.
KAREN: I’m Karen and I come and help Alex make cakes for his business. I help Alex with anything from baking, to decorating, we do cookies, cupcakes, full cakes. Get anything done that he needs for the week.
VICKY: Having the NDIS has just worked out so well for Alex. It’s just made his life better. Alex has a work experience package, so he has six hours one-to-one. So Karen came in and she’s just fitted in beautifully.
KAREN: Yeah, Alex and I work together really well, we’re a great team. So, when I first started teaching Alex, he was a bit quiet. But the more we decorate together we’ve got a bond, a bit more laughing and joking goes on, he takes the Mickey out of me, so yeah.
VICKY: Through having Alex’s NDIS plan, Alex sits in the driver’s seat and he decides on where his life, how he wants it to go, and who he wants in his life. And he can make business decisions for himself.
KAREN: Alex’s business is booming. We started off with, you know, we’ve got a cake every couple of weeks to now it’s like we’ve got three cakes today plus cupcakes.
VICKY: The goal is that Alex has the best possible life that he can have. It’s worked really well for Alex, the NDIS. He’s just, yeah, just thriving.
Ella has an intellectual disability and verbal dyspraxia. She has help from occupational therapists, speech therapists and a psychologist that has also been helping us actually with the school to work transition.
KERRY: We are still a trial site in Western Australia. During trial we can look at projects that really capitalise on possibilities with the NDIS.
We’re looking at getting young people the opportunity to get work experience and casual jobs in out-of-school hours while they’re still at school, because we know that will help them get employment after school finishes.
LEANNE: Ella joined the school to work transition, what about eight months ago? And she’d been working at a local café. And at the café, what were you doing?
LEANNE: Dishes, and what else? Were you wiping down tables? Yeah. And you were delivering coffees. Really good at that.
KERRY: The sky’s the limit. It’s really looking at what the student’s interests are and what can be developed around them.
LEANNE: Her confidence has definitely increased and I’ve noticed her resilience in dealing with people – huge difference. Huge.
LEANNE: It’s awesome, but what’s awesome?
ELLA: People are nice.
LEANNE: What about the food.
ELLA: Don’t get me started on that!
LEANNE: Don’t get you started on that ‘cos you like the taste testing, don’t you?
KERRY: As long as they’re interested and ready to explore it, then we can introduce them to a customised employment approach with skilled employers and providers, and see what they can achieve during school years.
LEANNE: At the end of the day, I hope she can live in the community and be supported, and just enjoy life. Just be happy. That’s what I want for her. I really want for her what she wants for herself.
They want water, then they tap me on the shoulder and say “All right, you go out and give the water out”. Yeah, I go to bed thinking about that every night. Every day.
I’m Tania, and I’m Griffin’s mum. And Griffin has autistic traits. He was diagnosed when he was very young. Griffin is the most tenderest, sweetest loving man. He always was as a child. We never had the need to be reliant on any services prior, and then he became quite ill. Suddenly we were all working, and then we we’re not. And then then we were interviewed when the NDIS started to roll out in Toowoomba. And then we realised he could have a support worker, for four to five hours on a Saturday or a Sunday when the games are scheduled.
I’m getting used to it but I think it’s really, really enjoyable. Before my first game I was nervous, but the challenges I face, I will face.
I did cry, I think, the first time. Because all my friends were there and we were all super proud of him. He’s really a big part of the club. They’ve celebrated him at the awards that we have after every game. He’s included. I’m in the audience now and Griffin’s down there wearing his uniform, the boys pat him on the back. He’s part of another community instead of just our little family.
By doing these things I think it just makes me more into a person and my state of mind and body language is helping me grow in different ways.
I’m hitting a patch where I’m feeling real good and things are going to get higher into the sky.
I’m in year one. I do Mandarin – Chinese. And my favourite class is English.
I’m Leah, James’ mum. James is a really happy boy. He loves sport. He loves running around and being active, playing with his friends.
James had some trouble communicating. He was never frustrated but his dad and I were the only ones who could really understand him. And friends would always look to us to interpret what he was saying and I felt like I became his interpreter everywhere he went.
We were concerned and we were told that it’s okay, just give it some time. And so we gave it time, but by the time he got to three we really thought that maybe he should be able to communicate with people that weren’t his family, so we thought it was time to seek some assistance.
James came to me at three years of age and he had limited words, single words and about 20-25 words. He developed very quickly. He came with a stutter as well and some articulation difficulties, so he needed a good three years to get us through all of those.
We kind of did like, words. And we even did some games. And sometimes at the end I got to play games and stuff.
Early intervention is getting the children in as early as possible to make sure that they’re developing skills required for primary school, high school, adolescence and into adulthood.
I went to Meagan’s in kindy I think. I finished about ten weeks ago and I got a toy dinosaur. A pterodactyl.
So we finished a couple of months ago I think, which was a big milestone for the whole family. Really exciting for him and for us. It was great for him to start school being able to communicate with his friends and the teacher. On the whole he’s picked up to where he should be and it’s just such a joy to see him communicate with his friends and everybody, going to birthday parties and being able to join in with everybody else.
My wife passed away twelve years ago after a six-year battle with breast cancer. And life has not been easy. It’s been a hard road.
When we had all three kids at home, it was 25 hours a day, eight days a week. And I required in-home support. I simply couldn’t do it on my own. I’d have different faces coming in every morning. Someone you didn’t know could rock up to your door, who didn’t know your children.
As a parent I simply didn’t know where my children were going to go, beyond the family home. The greatest development in all of that is the NDIS.
One of the main things is Bridget being offered external residence and full-on support. I’ve got peace of mind in knowing that she’s cared for and she’s comfortable and I’ve watched her grow and settle in. And she’s making a home for herself up there.
BRIDGET: Living here, it makes me happy and cheerful. I’ve been living here for two years. I’m happy because I have friends.
JOHN: They’ve become a little community up there. And watching her become a part of that, is what every parent wants for their child. She’s finding a home for herself beyond me, beyond the family home.
Riley, he gets fed up of being with dad all the time. So every second Saturday and Sunday, he goes out one-on-one, outside the home, so that’s allowed him some individuality. And those days I’m gaining a little bit of life back and that will evolve over time too.
I won’t say I don’t have anxieties – I do. But I’m far more confident about the future than I’ve ever been.
My name’s Peter and I’m a speech pathologist here at St Giles. Sam, he had some speech but a lot of people couldn’t understand his speech. Once Sam became a participant with the NDIA, we started exploring options and he ended up getting the app, Proloquo2Go. What it can do now is it can allow him to communicate about his interest and things that he likes. But he can also now have a thought about something or express a feeling and he can say that by combining words, so he’s moving towards having any thought and being able to express it. And we are able to provide more support in terms of getting Sam to use it in different situations.
Sam will come in to St Giles and we’ll do some work together with his device, and then Sam and I will do some things around St Giles. We might do some jobs that need doing, don’t we Sam?
And sometimes we’ll leave St Giles and go out and do some work out in the community together.
From his doing really well and being kind of like a mentor, we had the idea that Sam could maybe work with some of our other participants. We thought he would be really helpful in showing people how he uses his app and just being a model for other participants, but also for families to see what’s possible with these kind of systems.
The ultimate goal for Sam is to have paid employment, and he’s expressed an interest in that. We think he’s got the potential to do that with the things that he’s shown us already. We can often help people but the mentors or actual users can provide something different than what we can do.
I feel good about working at St Giles. I like being a participant in the NDIS.
I survived, but when I finally came out of the coma I found myself pretty much abandoned in the hospital, homeless, and really disabled. And eventually my children got a room in a ward here, at an aged care facility. It was really, really a dreadful time for me. I was 58 when I came to the facility. I was told that it would be only for two or three weeks. I’m 63 now.
I’ve been zealous about leaving aged care. But really I just want to be alive again. Now that I have the NDIS I am moving into independent living, where I will have the help that I need and I will be able to have a future. I’m here now and just simply waiting for the word ‘here’s the keys’.
The best plan is to work out exactly what you want and then put that forward. It takes what people like me feel like is forever, but I don’t believe in rushed jobs. The wait is worth it because when you do get your package, you’ve got hope. You’ve got a future. You’ve really got something to look forward to.
Lindsay had his stroke on the first of May last year. It was pretty devastating. I heard him fall and went into the bedroom and he couldn’t get back into bed. Not knowing what to do with him they wanted to put him in a home. And that meant, an aged care facility. And we just said no, we’re taking him out. That was the best thing we ever did.
We got a very good lady at NDIS, very supportive. One of the things that they said at NDIS, you’re aged parents. Which we are. We’re still fairly active, really, but for how long? We don’t know. Nobody knows. So we had to put things in place that were going to benefit Lindsay.
Well I got Ronald through SOLAS. Takes me here and there and helps me with shopping occasionally. Go in and visit all the geek shops.
He just took to Ronald like a duck to water. They’re good buddies.
The work I’ve been doing with Lindsay is giving him that mental support. Having a nice chat with him and to bring back those experiences that he missed out on. You know, go down to The Strand. He hasn’t been to the beach in a very long time. Yeah, he took this little remote control car and he just had a ball. It was just an amazing feeling, just amazing feeling.
He’s a completely different person. He’s just so enthused to go out and try and do things for himself.
I’d like to see him be able to be a little bit more independent. Because there are a lot of his age group who have strokes, or even younger. And they’ve still got a life to lead. They’ve got to have some independence.
That’s the worst problem with being disabled is, you tend to sit there and think the worst of things. You don’t think that you can do anything. I didn’t realise just what could be done. Stick with it. You might think nothing’s going to happen, but it does eventually happen. You’ve just got to be prepared to wait.
And after I was six, I was still not very well developed in English because obviously not being able to hear anything for a lot of your life is very hard.
CHELINAY: I couldn’t see a way forward for him so easily. And I couldn’t think that he would actually be independent. Since NDIS, he’s had lots of speech therapy, and if you’d spoken to him say a year and a half ago, you wouldn’t be able to understand him. I couldn’t understand him.
ONI: I’ve been working with a speech therapist to get my speech up and it’s really helping. I can say a few more words and actually pronounce them properly and all that.
CHELINAY: For him it was very moving when he went to NDIS, and the number of times he’s been, he’s been served by people who have disabilities of various types.
ONI: One of the best things is that they hire disability people. They don’t think that they should just be looked after, they hire them and they help them through their work and all that.
CHELINAY: He’s only been in one year and the changes have been remarkable. I’ve seen his confidence improve out of sight. I’ve heard him be able to speak and say words that we didn’t even know he knew.
ONI: With being deaf a lot of my life, dealing with it by myself isn’t really an option. NDIS has been there for a lot of this year and they’ve really been helping me through with the speech therapist and all other sort of stuff.
CHELINAY: In one year he’s made enormous changes that are unrecognisable. He’ll have funding for this next period to set him up and then that will end this year. And then, as far as he’s concerned, he no longer has a disability but he is being enabled to go on with his life.
ONI: Looking forward to actually learning the experiences of being a teller and actually working in a bank. Every single school week, I’ll be doing one day off where I’m working at the bank. I’ll have that until I’m in year 12. Depending on whether or not they want to hire me, they’ll either put me up to an official teller or an official worker at their bank, or they’ll try to help me find a different job.
CHELINAY: My hope is that his heart shines. Because he’s an incredible young man, he’s a deep thinker and he has a way of coming out of hardship.
I have autism but I see more of it as a difference, and that I think differently and there’s nothing wrong with that.
Kira is accessing the NDIS. We got involved about two years ago. Both Kira and I sat down and set some goals.
One of my goals is be an independent thinker and live life independently. So I wouldn’t have to be just relying on my parents all the time, because I do want to live on my own when I’m older and have my own career and stuff like that.
One of my main supports is my occupational therapist. That’s where I try to achieve my goals to become more independent and get jobs and stuff like that. Then I also have my speech pathologist to learn how to communicate more clearly and keep the conversation going.
Since Kira has accessed the NDIS she has become more social and she has become more of an independent thinker and is now able to make decisions on her own behalf.
The progress that she’s made has made me feel very proud.
You do need to accept yourself for who you are. Don’t see it as that’s who you are, but it’s a part of who you are. So you’re still a human being with value.
Ram was born premature, like 25 weeks. And he was in hospital for 103 days. He had a intraocular haemorrhage of grade four on the right side, which makes his left side weak. So, he’s weak with his left hand and left leg.
He needs so much of things like speech, he needed OT, he needed physiotherapy, even he needed many other equipment.
We had an appointment with NDIS in St Marys. It was something new which I don’t know about, NDIS. They are the people who can give you a good support for what Ram actually needs.
We met a planner and she said, don’t worry, there are many other services you can get. She took a list of what we want for Ram to achieve.
For me, as a mother, it is a very vast difference from what I saw him and how he was, because he is achieving all the goals which he has to. But now I can see he’s a totally different boy – using both his hands and legs. He’s walking, he’s speaking. Without NDIS I can’t imagine my life.
From the bottom of my heart to the end of my last breath, I’m thankful to NDIS for my son to be walking, talking and making possible all that he can do in the future.
A complete transcript is available below.
Between the ages of 19 to 21 to 23 I had a full body stroke, and it was very scary, I thought I was going to die.
I had a blood clot in the brain so I had a stroke, which means brain damage- permanent brain damage.
I had to re-learn to walk and talk and think like a normal woman would, learn how to shower myself, and bathe myself, and take care of myself again.
I have a support worker that comes in and out of the house to watch me do things, as I’m semi-independent. I live in supported accommodation.
I describe my journey as a roller coaster rolled into one.
NDIA has helped me grow into the woman I am today and it’s going to help me keep growing and keep supporting me.
That’s all for now folks, goodbye, Cindy Granger (Laughter).
As soon as I heard the NDIS coming in, I was really excited and pretty much started straight away. And it’s been fantastic in that now, the focus isn’t just on their disabilities or their challenges, but it’s about how do they become really productive, healthy, happy little members of society.
The NDIS is rolling out in North Queensland, and for people to find out more about it, I definitely suggest they get on our website, which is at www.ndis.gov.au
The NDIS is supporting Australians with disability and their families to live an ordinary life. This is Mark’s story.
Rhonda Galbally, NDIS Independent Advisory Council principal member:
An ordinary life is a life that’s not a fantastic life, not where everything fantastic happens to you. It’s a life that ordinary people would expect to be able to live at different stages of life.
Mark Smith, NDIS participant:
My life before the NDIS revolved around having seizures nearly every day, having brain operations because of the fluid build-up in my head. I wasn’t able to go anywhere, I was pretty much a hermit. There wasn’t any light at the end of the tunnel.
There’s so many different support outlets out there that was untouchable because I didn’t know about them. The NDIS just opened up a floodgate of doors. There was so many people then wanting to help, it was just amazing.
Returning to work, to me, would be the biggest thing because I’m not one of those that would just sit at home and just get along with doing what you’re doing at home.
And I’ve got other grandkids arriving this year. Without the NDIS getting involved, I wouldn’t be able to pick up my new grandbabies like that (Mark mimics holding a baby) because I was too much on a walking frame. It’s just made a big impact on day-to-day living.
More video stories on how the NDIS is helping people live an ordinary life will be released soon.