In the Parramatta region, there are hundreds, if not thousands of people who rely on the National Disability Insurance Scheme. Their daily battles don’t often make the news.
Managing a permanent condition like paraplegia, blindness, cerebral palsy or severe cognitive impairment is beyond most people’s lived experience.
Yet depending on fate, we or our loved ones could all need the NDIS someday.
The NDIS was heralded as a bipartisan reform to Australia’s social safety net on par with Medicare when introduced nearly a decade ago.
The central element is individual care packages to support people’s daily activities. Most involve managed plans.
This means the NDIS, directly or through a provider, pays the carer, therapist, wheelchair maker or builder installing a home accessibility ramp, and so on.
It’s a cost to the government, but that’s not the same as a cost to society.
In 2011, the Productivity Commission found the NDIS would add almost one per cent to
Australia’s GDP.
Proving eligibility is already gruelling, as those who know the scheme will attest.
Those who are profoundly and obviously disabled qualify for support. A more complex case might be where parents seek early intervention for a child with autism.
Or where a person has a less prominent psycho-social disability, or potentially combines multiple health conditions, such as arthritis and low vision.
In recent months, while much of Australia has been transfixed by COVID, the disability community has been ferociously fighting off a Federal Government push to further tighten admission through “independent assessments”.
Under the proposal, since shelved, people with disabilities would submit to extended interviews with private allied health providers.
They would also fill out a survey, then be scored and assigned to one of 400 “personas”.
From here, their funding package would be calculated through an artificial intelligence platform informed by an algorithm. (Currently, participants submit reports from their treating specialists and receive tailored funding based on need.)
Let’s step back a bit.
For anyone, let alone with a physical or intellectual disability, it has to be deeply traumatic to receive a grilling from a stranger, knowing your economic future depends on your
answers.
A process that forces vulnerable applicants to justify their own funding involves a power imbalance.
The government’s rhetoric alleging NDIS cost blowouts hardly engenders trust.
There are also real ethical questions with using artificial intelligence to ration funding.
How can someone’s complex experience of disability ever be reduced to a score? How to control for biases in data?
Citizens should have the right to challenge government decisions. But how can you challenge an algorithm?
Imagine if this proposal extended to our health system and became the basis people were awarded (and denied) life-altering treatments such as organ transplants, cataract and hip surgeries.
The Robodebt scandal, where an automated process ordered Australians to repay inflated or non-existent Centrelink debts, illustrates the perils of letting technology run amok.
Nobody believes the NDIS is beyond reform. However, conflicting accounts of the scheme’s finances need to be scrutinised independently.
Many say it’s the administration of the NDIS that needs fixing, as well as the price-gouging by service providers.
Above all, let’s remember the NDIS is a scheme founded on Australians’ best instincts of care. People are at its centre – the very same people whose consent should be sought on any reform.
Alan is a journalist and communications specialist. He writes a weekly column for Parra News.