Change can be difficult for anyone, of any age.
It might leave you scared and confused.
That feeling can double when you live with disability.
And if you’re a participant of the National Disability Insurance Scheme (NDIS), change can also have implications for your ability to shower each day or choose who assists you to get out of bed.
The states and territories have now agreed to support amendments to contentious legislation to reform the $42 billion scheme.
It broke a bitter, months-long stand-off that saw premiers and chief ministers band together against the Commonwealth, and had the disability community feeling like a political football.
NDIS Minister Bill Shorten says the passage of the legislation will be “the construction of the scaffolding” enabling co-design to begin, including on many of the reforms that have been making headlines such as the proposed needs assessments and what you can spend funding on.
The resolution of this political deadlock was just the first step — there’s far more water to flow under the bridge.
When the legislation passes parliament, which could be as early as today now it has support from the Coalition, the government will face a very apprehensive disability community.
The concern we’ve heard from the disability community every week since the legislation was introduced has been huge.
Given the billions of dollars involved, the political stakes for these reforms are high.
But for many NDIS participants, the personal stakes are higher.
These are people who might be receiving disability support for the very first time.
People who live every day with their antennas up and are used to fighting tooth and nail for the most basic of supports.
People who will tell you in a heartbeat that, despite the complexities and bureaucracies of the scheme, it’s transformed their lives.
The government might’ve found a way to get its political adversaries off its back, but it’s unlikely the disability community will be as easy to convince.
“We want to work [with] whichever government of the day to make the best legislation we can to improve the NDIS — but this is not it,” said People with Disability Australia president Marayke Jonkers.
“It’s very difficult for people to trust when the trust has been broken and it’s very difficult to trust changes … before you’ve seen the detail.”
The real work — and the long-promised co-design process, which many in the disability community feel should have started months ago — now begins.
Serious concern remains in the community about the extra powers the legislation affords the agency that runs the scheme, and what will come of the proposed “foundational supports” for those outside the scheme.
While the NDIS now has more than 660,000 participants, the vast majority of the estimated 5.5 million Australians with disability are not participants.
“We need to make sure foundational supports deliver for … the people in the scheme but [also those] outside the NDIS, who at the moment, are getting little to no support at all,” said El Gibbs, deputy CEO of Disability Advocacy Network Australia.
“I’m really worried that we’re not seeing the certainty we need about the financial investment.
“There is going to be a really extensive co-design process and it’s certainly something I will be holding the government to account on.”
This is now the ultimate test for the government and an opportunity to show the country how to balance two of the most important aspects of public policy: what is best for the taxpayer and what is best for the community.
People with disability just want to know change isn’t going to come at the cost of the fulfilling, independent lives they’ve managed to build for themselves.
This story first appeared on the ABC website.
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