News that the annual cost of the National Disability Insurance Scheme (NDIS) is predicted to reach $50 billion in 2025-26 has caused much handwringing in Canberra and in the media. So much that NDIS Minister Bill Shorten has announced a review of waste in the scheme.

Despite the high levels of spending, people living with disabilities are far from being well provided for under this scheme. A small percentage have managed to traverse the bureaucratic maze to get things such as home assistance, wheelchairs and home modifications that substantially improve their lives. No decent person would begrudge them that, whatever the cost. But much of the NDIS budget is absorbed by profiteering providers, which means greater spending, without a major overhaul of the scheme, will not improve the situation for most people living with disability.

Des Graham, the chair of MS Australia (a NDIS provider for people with multiple sclerosis), says the NDIS is “clearly broken”. People living with disability, he told the ABC, are either “not getting access to it”, or, if they are, “aren’t getting the right packages”. Tragically, the way the NDIS was set up means that they were never going to get quality care. A stifling bureaucracy has actually made the situation worse for the vast majority.

In an interview on the ABC’s Insiders in June, Shorten declared that the NDIS “is a bureaucratic nightmare ... a maze of red tape”. This is not just the result of bad management, as he implied. The NDIS is the epitome of the kind of bureaucracy typical of capitalism. Georg Lukacs, the Hungarian Marxist, explained such bureaucracies as “the formal standardisation of justice, the state, the civil service etc”, debasing “all social functions”, which in turn “results in an inhuman, standardised division of labour” typical of a factory. The result is sterile, repetitive uniformity divorced from the needs of individuals and driven by the capitalist mentality that reduces everything to a monetary value. This perfectly describes the reality of the NDIS.

The Productivity Commission drew up the model for the scheme in 2011 based on a proposal from the extreme right-wing Institute of Public Affairs. It emphasised the need “to have clear rules about who is entitled to what; careful processes for assessing the needs of people with disabilities; careful management of the costs of the scheme”. These phrases warned of a bureaucratic nightmare.

It was explicit from the start that very few living with disability would be eligible. The documents repeatedly referred to the fact that it was intended only for those under 65, with a “significant and ongoing disability” (their italics). The minority who fit that description—as assessed by the National Disability Insurance Agency (NDIA), which administers the scheme—would get services and resources to meet only what was deemed “reasonable and necessary needs”.

The assessment of those needs considers any support an applicant gets from family and friends. So no matter how difficult it is for your family to provide you with support, the agency can rule you ineligible for NDIS funding on the basis that you already get some support. In other words, family members are effectively compelled to provide services that the state should be responsible for.

The process of having your needs assessed is intimidating in its complexity. The Productivity Commission report says that people would “choose an intermediary to be a service broker, provide management services, personal planning etc.” and that disability support organisations could “act as intermediaries”. Intermediaries! Service brokers! This language deliberately reframes services that people need and have a right to as commercial interactions that must be subject to commercial considerations.

Worse still, plans drawn up by these “service brokers” are often sent to the NDIA without the claimant having a chance to review them. If they want to make any changes to the submission after the NDIA has approved or rejected it, they have to start their application all over again.

Claims are also expected to fit into boxes that don’t necessarily reflect individuals’ experiences. Variation or nuance are frequently treated as suspect, likely to be an invention by the claimant to pocket more than their entitlements. As if to emphasise the sterile, inhuman, bureaucratic approach expected of assessors, a system similar to Robodebt has been considered as the way to assess people’s needs and calculate their entitlements.

As it is, people with complex needs are often assessed during a single phone call by people untrained in disability support. Kelly (not her real name) lives with MS, the most common incurable chronic neurological condition in Australia, with which around 25,000 people live. “My neurologist ... was like, ‘Are you kidding me? They are asking you for proof that you can’t be cured?’”, she told the ABC. “It was really deflating. If they [the NDIS] don’t understand about it not being cured, how are they going to understand what help I need?” Kelly has to use a wheelchair away from home and lives with constant fatigue and pain. She is “disappointed and baffled” that her claim to increase funds for an exercise physiotherapist from one hour a week to two was refused.

A 2021 CSIRO study into how the NDIS serves people with MS highlighted how the lack of trained staff leads to the denial of people’s rights. It found that it was far more likely someone with restricted mobility—such as needing a walking stick or wheelchair—got the support they need than did those living with “invisible” disabilities caused by neurological conditions. Declining cognition, disabling neurological pain and the like—caused by Parkinson’s disease, MS, brain injuries and similar conditions—are much less understood by non-specialists.

Des Graham says the NDIA needs to recognise it is not a disease management expert:

“It is quite unbelievable the amount of assessments you get from your specialist neurologist, your specialist pain physician, from your urologist that goes into your application, only for someone who’s unqualified, with all due respect, to make a decision that in fact you’re not entitled to that package because you don't meet the criteria.”

Parents with children on the Autism spectrum also deal with uncomprehending assessors. Their children’s need for support at school is often dismissed as something education departments should fund. People with a range of conditions are often told that they should be accessing support or therapy through the health system rather than the NDIS, which frequently means the denial of affordable support.

The NDIS also doesn’t help the majority of people living with disability. Around 4.4 million people are estimated to be living with disabilities in Australia. The NDIS covers only 518,000 of them. Shorten spelled out clearly on Insiders that the NDIS “can’t subsidise everyone”—it is “only a lifeboat in the ocean”. Nearly four million are not just locked out of the NDIS, but have lost previously affordable services, leaving them, as Shorten himself described it, in the “wasteland” outside of the scheme.

Before the NDIS, many of those four million relied on community, not-for-profit and disability advocacy organisations for subsidised services such as physiotherapy, home care, social support and the like. But state governments, using the excuse that they bear half the cost of the NDIS, embarked on a massive drive to defund and privatise these “second tier” support services.

Many living with neurological conditions don’t fulfil the NDIS criteria, but do need things like hydro, physio or occupational therapy. Previously, MS Australia provided physiotherapy for under $10 a session by specialists trained to understand MS. Now, they offer services only to NDIS participants. The thousands locked out pay around $90 a session for therapists with minimal knowledge of MS.

Health sector unions campaigned against the closures and privatisation of the not-for-profit sector. But like most union campaigns of recent years, they were not prepared to make the necessary fuss it would have taken to stop the attack. Privatisation has meant sackings and cuts to workers’ conditions, with many forced to offer their services as individual contractors.

So virtually all services for people living with disability are now privatised. This means people’s needs are commodities to be bargained for on the market, the fulfilment of the IPA’s neoliberal vision. As its designers intended, companies salivate over what Michael Pascoe, writing at the New Daily, called the “NDIS honeypot”.

In October, health insurer NIB announced that it intends to become an NDIS plan manager. To this end it is buying up Maple, the seventh largest NDIS service provider, with the tag line “profit for purpose”. Citing the billions being poured into the scheme, NIB informed investors: “The NDIS has become a vitally important part of Australia’s social capital and a significant economic sector”.

Even right-wing economists are cynical. Ross Gittins, quoted by Pascoe, said: “Contracting out to providers in ‘thin markets’—a Productivity Commission euphemism for pretending there’s a market where none exists—is a big part of the reason for the blowout in the cost of the NDIS”.

Shorten insists that reducing NDIS spending won’t affect claimants. He promises to root out corrupt providers and others rorting the system. But he’s unlikely to change its basic structure, which is what it would take to fix it.

Tragically, the appalling state of existing disability services in 2012 led to overwhelming support for the NDIS. The Labor government and then the Liberal government, backed by many in the disability sector, nurtured unrealistic expectations of a “person centred” scheme “providing choice” and putting people in control of their care. Disability Discrimination Commissioner Graeme Innes declared that people with disabilities were “Overjoyed, crying with relief”.

The MS Australia magazine, In Touch, after years of uncritically touting the NDIS, has at last begun to face the reality of this neoliberal nightmare, running articles like one about 45-year-old Rebecca. Rebecca can’t walk more than five metres unaided, and suffers falls. She experiences, among other things, daily brain fog and chronic fatigue, and struggles to find words.

Her experience is typical: after submitting a claim, she was contacted and asked, “Can you catch the bus and walk 10 metres?” “It would depend on the day”, she replied, a typical response by anyone living with MS. Her claim was peremptorily rejected via a subsequent phone call.

Disability advocacy groups campaign to have people who understand particular disabilities on the NDIA and as assessors. While this would be welcome, the bureaucratic straitjacket surrounding the scheme, plus the corrupting influence of privatisation, means this would not adequately compensate for the system’s deficiencies.

What is needed is a universal, publicly funded scheme organised to meet the needs of those living with disability, not one dependent on for-profit disability service providers overseen by money-grubbing bureaucrats. This won’t be won without a massive campaign by unions and those who genuinely support the rights of people living with disability.

In other words, the fate of disability care depends on rebuilding a fighting left and union movement prepared to fight for all the oppressed. This is not easy to achieve. But the goal is a good guide to what the next steps are that will eventually get us to winning the care and support that are the human rights of all.