After more than a decade of the NDIS, has anything changed about the way we value disabled lives?

After a mighty amount of work from disabled people and their families, supporters and allies, the NDIS came into being more than a decade ago. But has the exclusion and isolation of people like me actually been addressed?

Listening to discussions about us as “burdens” and “costs” has been infuriating and wearying. Disabled lives have become reduced to just how much our essential supports cost with no consideration of us as citizens, deserving of a place in the community.

This week’s release of the final report from the NDIS review is a moment to consider if much has changed in how we value disabled lives. Are we seen as equals, or as those people over there, in the disabled place?

The fight that fuelled the campaign for the NDIS was about two parallel paths to equality, both as important as each other: one about the necessary and often life-saving supports that many disabled people need, and the other about inclusion in the community, in public services, spaces and activities.

In 2009, the landmark Shut Out report laid bare the stark realities of life in Australia for disabled people. It found that many of them:

“… live desperate and lonely lives of exclusion and isolation. The institutions that once housed them may be closed, but the inequity remains. Where once they were physically segregated, many Australians with disabilities now find themselves socially, culturally and politically isolated. They are ignored, invisible and silent. They struggle to be noticed, they struggle to be seen, they struggle to have their voices heard.”

Public services, mostly run by states and territories, haven’t changed much at all, with schools, health services, criminal justice and child protection services often targeting and excluding disabled people.

Research from the disability royal commission found that “parents who actively seek support or help from family or services can find their actions construed as signalling their inability to care for their children”. This includes seeking the very disability support that their kids may need, and particularly for First Nations families.

In education, disabled and First Nations children are the ones overwhelmingly being suspended and expelled from school, one analysis has shown, which can lead to a low rate of disabled people finishing their education.

Public transport remains inaccessible in most areas, particularly outside the inner cities where most disabled people can’t afford to live. Most housing that is built is inaccessible and unaffordable for disabled people. More of us live in poverty, rely on income support and work part-time, if at all. The employment gap has remained profound for decades.

Another report commissioned by the disability royal commission calculated that the cost of the systemic neglect of people with disability was $27.7bn a year. Deloitte calculated that the cost of our exclusion was even bigger, finding that by investing in health, education and employment inclusion, “Australia could unlock close to $84.2bn per annum in collective economic and social benefits”.

This is what a fight between different levels of government is actually all about. Disabled people are close to 20% of the population, and yet we don’t get a fair share of the community facilities that everyone contributes to.

When talking about the costs of the NDIS, the poverty of disabled people and our families is often ignored. Disability supports, both through the NDIS and elsewhere, are as essential as healthcare, and yet are talked about as though they are some kind of luxury item.

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The NDIS has meant that so many disabled people have support for the first time, including many children at critical times in their development, such as when starting school. Small amounts of speech therapy, physiotherapy or other allied health for kids with disability in their early years are essential in making sure they have the best start in life.

Most of those kids come from families that can’t afford this allied health support without the NDIS – that extra $150 or $200 a week of support is life-changing for them, now and into the future.

This is why we have public services, to make sure that everyone can get an education, access healthcare and use public transport. The NDIS is another public service, yet doesn’t get talked about like that, particularly the role the scheme plays in supporting children early in life.

All public services – not just the NDIS – are vital to make sure disabled people don’t continue to be sidelined, living in poverty, away from everyone else.

And yet, in the current political fight, both are under threat. Will the national cabinet’s agreement to deal with this inequality bring about change? Or are disabled people once again in danger of being pushed aside, when all we want is a seat at the table with the rest of you?