This is the kind of critical but constructive relationship you would expect from a peak body advising government, and it is one of the reasons that the ACT government and community sector both stood against national changes to regulations which would have silenced charities which were happily put on the backburner last week.

But one thing we are in complete agreement about is the need to end a decade of agonising uncertainty for people with disability, families and carers.

The ACT was the first jurisdiction to sign onto the National Disability Insurance Scheme and begin implementing it, starting with a program of individualised grants in 2012 and ramping up to the full scheme for groups starting with children and those nearing 65 from 2014.

It was a path that achieved a rare level of tripartisan support in the ACT, and bipartisan support nationally. This rare gift of multiparty support meant advocates and policymakers alike had cause to hope that this marked out the NDIS as another Medicare - a settled piece of social insurance that was set to endure outside the whims of government.

But this was not to be, and since then the NDIS has been plagued by fear and doubt. The ACT's place at the starting block puts us in a unique position to observe the corrosive effects of a decade of inquiries, reviews, audits, intergovernmental disputes, rule changes, mooted legislative changes and cuts to plans for the people who rely on the scheme for day-to-day supports.

In the midst of these inquiries, we've both seen enough media drops from the federal government about "NDIS cost blowouts" to cover the landmass of the ACT in newsprint, like a wrapped monumental artwork by Christo and Jeanne-Claude.

We had hoped this long period of uncertainty had reached its apogee last year, when at the height of the pandemic the federal government, via former minister Stuart Robert, unveiled the most radical raft of changes to the core elements of the scheme since it was proposed by the Productivity Commission.

The changes - which included a regime of mandatory outsourced independent assessments and changes to the framework of person-centred planning at the heart of the scheme - were so radical that they prompted activists to stage physical protests and crawl out of wheelchairs outside NDIS offices.

A grassroots campaign, launched by people with disability and families and backed in by a number of state and territory ministers, saw the government take these changes off the table in early 2021. It was a rare and remarkable reversal of policy intent by a Commonwealth government on a major cost-saving measure.

This week saw the Band-Aid ripped off again, with another round of comments by the federal NDIS Minister, Linda Reynolds. Ms Reynolds called on states and territories to take more responsibility for funding the scheme, stating that the NDIS was "not sustainable" and was never intended to function as a "welfare scheme".

If there is one thing we can agree on with the minister, it is that the NDIS is not a welfare scheme. It is a social insurance scheme. It does not put cash into the bank accounts of people with disability, but instead ensures that people with disability can access supports and services they need in their daily lives. It pays for things like wheelchairs and mobility aids, respite, modifications to homes and vehicles, and personal care to ensure people are able to participate in work or education or community life with safety and dignity.

On top of the experience of COVID, people with disability are still being continuingly driven to distraction with threats to basic supports they need to stay at home, in school and in employment. We're not talking luxury items, but equipment, respite, personal care and transport.

Social security or welfare programs are an important part of a functioning society whose members support and care for each other. But to describe the NDIS incorrectly in this way leads those who have no personal experience of the scheme to think of it as one group in our society having access to money that others do not. It is a framing intended to create division. It is an incorrect way to frame a universal insurance scheme.

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One of the things we have all learned as we've supported each other through the past two years of fires and smoke and COVID (and their economic impacts) is that we are stronger together. We need the creativity, adaptability, resilience, and empathy of everyone in our community if we are to not just survive, but thrive, in a world and a society experiencing change.

The federal government stoking fear by telling us there is a scarcity of resources for people who need support is disingenuous and divisive. Budget spending is a matter of priorities, and reflects what we value as a community. If we don't value each other, we are not a community at all. Community is all about the connections between all of us, and recognition that we are more than just the sum of our individual parts.

People have had enough. The federal government must stop frightening exhausted people with disabilities and carers over their lifeline to basic disability supports.

The federal government must work co-operatively with the states and territories to ensure we provide certainty and surety to people with disability so that supports are guaranteed across people's lives.

On the one hand the federal government wants the states and territories to take more responsibility for funding the scheme, and on the other it wants to take away their powers on rule changes.

The people always missing from that equation seem to be people with disabilities, who need to be involved in a genuine co-design process to improve their experiences under the NDIS.

After a long decade of uncertainty, it's time that all Australians with disability, but especially Canberrans who have borne it the longest, are able to finally rest assured that their basic supports are guaranteed through an insurance scheme which retains the overwhelming support of the community sector, ordinary Australians and the governments which represent them.