We need to talk about the NDIS

Written by Hannah Diviney; author, activist and client of CPA.

Hannah writes a regular column for CPA exploring her journey with cerebral palsy and activism - head here to check out previous blogs and hear Hannah on Cerebral Conversations podcast. 

Hi friends,

It’s good to be back sharing my thoughts for April, even if we do need to talk about something a little more serious than usual. Don’t worry, everything’s fine – we just need to have a little chat about the NDIS. If you’ve read that and sighed or rolled your eyes, I get it. I’m tired too, but that exhaustion is why I’m writing this.

To be fair to the Gillard Government which launched the scheme a decade ago, the idea that every disabled person in need of financial support across the country could apply for a tailored package of government funding is a great one. That’s why it got such a strong show of bipartisan support because it has the ability to transform our lives. Chances are, if you’re reading this, you don’t need me to tell you how expensive being disabled is, from the support workers and the equipment to the therapies and medications.

People with disabilities deserve to be able to take care of themselves and build a meaningful and freeing quality of life without breaking the bank. And yet in practice, the NDIS has been messy and painful, forcing people to fight tooth and nail for their every need. I don’t know exactly what went wrong in between planning and execution, but I do know that over the last few years, many people have been left feeling stranded and unseen instead of safe and secure.

For many, the NDIS asks them to fit their disability inside a too-small box it is not made for, if it even recognises their needs at all. You don’t have to look hard to find stories of people with invisible disabilities realising they’re not eligible for NDIS support and how difficult and dire things can get when everything has to come from their own pocket. For those of us who can use it, we don’t come away unscathed either. Navigating the endless reams of paperwork, assessments and evidence collection processes built to make sure everything anyone asks for is justified, can feel like an Olympic sport. Not one disabled person I know including myself has ever gotten everything we’ve asked for, everything we’ve needed.

Instead, we’ve had to live with decisions made by people who know nothing about us. People who exist in a vacuum, both completely isolated and insulated from the realities of living with disabilities. Who fail to understand we’re not asking for ‘nice to haves’ because we want luxuries, but instead asking for what we need so that we can be in control, have our own sense of power, choice and independence - things able-bodied people take for granted every damn day.

People are having their plans slashed, their funding cut with little or no explanation, forced to miss out on things that make their lives fuller because the people with the power just don’t get it. I don’t know about anyone else but I’m sick of desperately hoping that the planning meetings with my Local Area Coordinator go well and they take good notes so that a faceless stranger who doesn’t know me or my life, from Eve, can push a button and instantly decide how much financial support I’m worthy of for the next year.

That has to stop. Our community can’t keep going like this. We’re exhausted and afraid, always trying to plan ahead, make contingencies, work out what we can go without. The NDIS is broken. Now, I don’t have all the answers about how we fix it, but I’d start by putting people with lived experience at the very top of the food chain. Someone who gets it. Someone who can make sure we never again have a Prime Minister believing he’s blessed not to have a disabled child, by setting an example in Cabinet. The next Minister of the NDIS needs to be a person with a disability. The NDIS promised us power, control, choice, independence and agency. In so many ways, that promise has been broken. But it doesn’t have to be. We can still fix it. But we need your help.

When you walk into the voting booth on May 21^st, can you do me a favour? Think about this article and all the things I’ve said  and then, cast your vote. Our community and the communities of so many others depend on YOU making the right choice.

Hannah x

If you’re interested in joining a campaign community that raises the voices of Australians with disability, check out CPActive.