Because your support should not depend on what state you live in or the cause of your disability

Before the NDIS, disability services were underfunded by the states and territories. Some states funded disability better than others, some states hardly funded disability services at all. So once you got some support you held onto it for dear life, and you couldn’t take it with you if you had to move to another state. If you lived in a border town, things got very silly – you couldn’t access a disability service down the road if it was in a different state from where you lived.

There was also huge inequity between people based on what caused their disability. Disability acquired through a road accident would lead to lifelong support, but if you were born with a disability you were not guaranteed of any support at all. I recall a speech by Bill Shorten back then saying that we were treated like second-class citizens, he was spot on.

Because parents shouldn’t die worrying what will happen to their child

Before the NDIS, Access Economics reported the economic value of unpaid care provided to people with disabilities at $40 billion a year. Without the NDIS, disability support needs were met by unpaid carers, usually mums and dads, who had no idea who would support their adult child when they were no longer able to. It was not unusual for a mother over 80 to be caring for her 50-something son or daughter. It was stories like these that convinced our former Prime Minister Julia Gillard that we needed an NDIS.

Because disability can happen to any one at any time

We are all just 1 slip on a staircase, from life in a wheelchair. Or your child may be born with or aquire a disability. Disability can happen to you or your family in an instant and you want to know that you will have the support that you need. Before the NDIS, this could not be assured and in fact was very unlikely. The NDIS provides this assurance for all Australians, currently disabled or not.

Because aged care facilities are no place for young people 

If you acquired a serious injury and were well enough to be discharged from hospital, you would probably be sent to an aged care facility and get stuck there for life. The state funded systems did not provide enough funding to support you in your own home. If you were really lucky, you might get out eventually. But that was only if you had a good advocate and got your face in the media, but the media wasn’t interested in disability back then. There are still too many young people in nursing homes, and we need to do more to get them out.

Because we should be in control of our lives

Before the NDIS, government funding for disability services went mostly to providers and not to people with disabilities. Services were block funded. People with disabilities had little choice and got stuck with whichever service had a vacancy. There was no incentive to improve service quality, and you had no control over who provided your support. Some people were forced to live in large institutions. The NDIS turned this around by funding individuals, forcing providers to compete for customers. Unfortunately, thin markets and a lack of competition continue, especially in regional and rural areas.

We must continue to defend the NDIS as it was originally intended

While the NDIS is far from perfect, it has been a game changer for people with severe and permanent disability and for our families. Because of the NDIS, almost 600,000 Australians with disability receive support, benefiting ourselves, our families and our communities. It generates jobs and investment and grows our economy. It was built on a promise that all Australians with disability will have the support that we need to live a good life and be in control of our lives and our support.

As a community, we will continue to hold the government to that promise. And that’s why we must take this opportunity now, with the NDIS Review interim report just released, to have our say on what’s working and what needs to change. To understand the importance of this review take a moment to check out my exclusive first interview with Professor Bruce Bonyhady and Lisa Paul about the importance of the NDIS Review for our future. He says, “(the NDIS Review is) in many ways, not just our best chance to get the NDIS back to what we all fought for, but it is really our only chance.”