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Alison and Suze's NDIS story

A best friend knows all of your life stories, but a sister has been through all of them with you...

“Why should it be that just because she was born with a disability and I wasn't - that we should have such different lives? I hope the National Disability Insurance Scheme will help change this by supporting people like my sister to have access to the things the rest of us take for granted.”

Every Australian deserves the peace of mind that comes with knowing this: that if they or a loved one have a significant and permanent disability, they will be covered – no matter where they live or how they acquired disability.

This idea, which once seemed impossible, became a reality from 1 July 2013.

The National Disability Insurance Scheme, is an historic reform for the country and has been long-awaited by many people with disability, their families and carers.

“I have this joke about Canberra about ‘six degrees of separation’, not that there are six degrees between you and another person, but there are six separate and independent ways you can trace yourself from one person to another, and if you think about that in terms of a social safety net for people with disability that has incredible potential.”

Canberra-born Alison Oakleigh is the guardian to her sister Suze who has cerebral palsy.

For many years Alison, together with her family, have supported Suze and have tried to provide her with the best support services and care they can find, but it hasn’t always been easy.

“I think that the Scheme would give Suze and myself a sense of certainty. On a concrete level it will help us to support her to exercise choice about who it is that she pays to support her and the kinds of things that she gets to do with that time.

Alison says at times she feels really disempowered by the current disability system when she couldn’t find the supports needed to provide services that would be beneficial for her sister.

“I want my sister to access the community in ways that everybody does.

“I expect my sister to have the same things in life that I have - which includes a chance to hang out with a variety of people, not just other people with disabilities, not just in groups, and not just at shopping malls,” Alison says.

The NDIS will help people with disability build supportive networks and empower them to participate in their community.

For too long people with disability have faced a system described by the Productivity Commission as inefficient, unfair and underfunded.

Most people don’t receive the support they need or a have choice about what supports the want; and many aren’t in control about how they want to live their life.

The NDIS will change the way support services are accessed and used, and it will put the choice and control back into the hands of people with disability.

It will support Australians who have significant and permanent disability to live their life so they can achieve their goals by empowering them to choose supports that best meet their individual needs and preferences.

“My sister is supported by a range of services that allow her to go out and about during the day and during the week, and by a range of difference organisations, and our satisfaction with those organisations comes and goes. Sometimes it’s really good and sometimes it’s not. But I think overall it’s a mystery,” Alison says.

“I think the Scheme will help demystify what it means to get support – it will help us with control and choice. That really is what I’m hoping for but also for flexibility."

“The Scheme will give Suze a bit more choice over how she accesses the community. The challenge for us would be in finding services that are innovative and are impressive and are forward-thinking and flexible but it’s exciting to think that that might be possible.”

One of the core aims of the NDIS is to better support carers and families in caring roles. It will move away from the crisis model where families and carers only receive support if they are unable to continue and there are no other options. Instead, the Scheme will work with people with disability, their families and carers before any crisis arises to make sure that the invaluable support informal carers provide can be sustained.

“I would like the Scheme to provide my sister with quality support. I would phrase it in terms of giving her a valued role, to support her to have valued roles in the community,” Alison said.

“What I would love for my sister is for example; a little while ago I was at the Canberra Hospital and I bumped into a friend of mine and at the time I didn’t realise but he was there as part of the psych ward. He must have been just wandering around the hospital at that particular time. I was there with my mum, and I said, “hello it’s really nice to see you” and I was able to say to my mum “this is the guy who is the host, the MC of these events that I like to go to”.

“And the fact that I had something like an anchor when I was introducing him to my mum, you could almost see him grow a bit taller that day cause I was able to introduce him in terms of what his valued role was to me, as opposed to, ‘this is so-and-so who is clearly here at the psych ward not doing very well today’.

“So I would love for when my sister was to bump into someone and they were introducing her to a friend, they could say, ‘oh this is Suze who helps out at the local shops’ or ‘this is Suze who’s a volunteer at the local nursing home’ or ‘this is Suze who I know from church’.

“I’m excited that the Scheme will be flexible and that we will have the opportunity as my sister’s guardians to be able to try and find innovative ways to support her to have these valued roles, not in that kind of mainstream traditional way that we have only been offered so far.”

The NDIS will also drive improvement and innovation in services that meet the needs of people with disability and, over time, work alongside community and mainstream services and programs, supporting them to become more welcoming and inclusive.

“I think it’s great that there will be a first stage launch in Canberra because if we do it well anywhere we should be able to do it well here, it’s a small enough place and we’re a well-educated enough public. It will be great, I’m really looking forward to leading the charge with that. I’m delighted that we’re going to be doing it here because we have a lot of capacity for a lot of innovation, and a lot of community connections.”

From July 2013, the first stage of the Scheme began in South Australia, Tasmania, the Barwon area of Victoria and the Hunter area in New South Wales; the Australian Capital Territory and the Barkly region in the Northern Territory will begin in July 2014. Around 26,000 people with a permanent and significant disability will benefit in the first stage of the launch.

“I hope the Scheme will get the ball rolling where you can get things in place for the person that you care for which will then give you time to be a productive member of society,” Alison said.

“It would be nice to not be lurching from crisis to crisis constantly, which is sometimes what has been happening for my sister when things haven’t been so stable. Sometimes you’re just constantly in crisis mode, and you don’t have the chance to think about the positive things in the future.

“I know as a guardian I don’t think people really do understand what it’s like to have the responsibility of someone who doesn’t necessarily have a voice of their own. I certainly feel the responsibility, and rightly so. I think it’s a weighty responsibility to have but it’s also a privilege to be able to challenge yourself outside your own shoes every now and then, to try and think of life from my sister’s perspective.

“What would Suze be wanting right now? What’s important for her? Is it the same to what I think is important to me, or is it different? How is it similar, how is it different?

“I hope the NDIS will make it possible for other people. Sometimes I feel like that we’re lucky and that we’re a good example of how things could be when they go well.

“I see other families in other circumstances and things haven’t gone as well, other families where a person with disability doesn’t have access to supports and care.”

The NDIS will give all Australians the peace of mind to know that if they have or acquire a disability that leaves them needing daily assistance with everyday life, or if they care for someone who has a disability, that they will be supported.


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Alison and Suze's NDIS story by National Disability Insurance Scheme Launch Transition Agency 2013 is licensed under a Creative Commons Attribution-NonCommercial 3.0 Australia License.
Based on a work at’s_story.