It’s been 50 years since ACC was founded, and thousands of disabled people are still waiting for the coverage they were promised.

On Easter Monday, New Zealand quietly marked a half a century of the Accident Compensation Corporation. Three and a half million New Zealanders have not experienced life in this country without it. Most of us assume that the ACC system will support us if we get injured and we live our lives accordingly, without a second thought. But as we are celebrating the ACC system, we are also watching the rest of the disability support system come under attack.

In response to what has been described as a “budget blowout”, Whaikaha Ministry of Disabled People has put severe restrictions on disabled people to limit how they can spend disability support funding. The restrictions also impact access to equipment and housing modifications.

While some people with injuries are celebrating a half-century of success under the ACC system, others with disability are suffering from a “disability divide” that the founders of ACC never intended. This impacts on us every day. We can’t live our best lives because there is simply not enough money in the system, and as a result the government has implemented a new one to ration how we spend it. This limits our independence and impacts how we work, live and socialise in our communities.

The divided system is not working. As ACC chief executive Megan Main herself admits, the ACC system can be difficult to navigate. We all know that the Whaikaha system is difficult to navigate. We spend nearly a billion dollars a year to separately administer the ACC system and the Whaikaha system. It’s worth thinking about what it would be like if we had a single system without the disability divide. Maybe it would be much cheaper to administer, delivering a better quality of life for those who need support and making access to help easier for us all.

This kind of approach is not a new idea. It’s a system we’ve already dreamed about – we’ve just never done it. When ACC was first proposed, it was as a remedy to an inefficient system of the time. At the time of its inception, Sir Owen Woodhouse, the principal architect of the ACC scheme, explained the issue with the current disjointed system for injury care:

“Such a fragmented and capricious response to a social problem which cries out for coordinated and comprehensive treatment cannot be good enough. No economic reason justifies it. It is a situation which needs to be changed.”

At its inception ACC was going to be a system for everyone. It would initially provide compensation and rehabilitation for anyone with disabilities caused by injury in New Zealand, and it was then going to be expanded to cover all disabilities, regardless of cause. The disability divide would be removed.

Unfortunately, this plan was never realised. We left expansion to another day and instead have come to accept that the cause of your disability determines your quality of life. Instead of one system, we have what can feel like innumerable ones: ACC for those of us disabled by accident, Whaikaha for some of us, and a whole lot more ad hoc services that have popped up in response to the next gap that has emerged. Those of us who don’t get ACC support are living in a shadow system of exclusion.

In practical terms this has huge implications for disabled people’s lives. Two people with very similar circumstances and needs can receive vastly different levels of support. In 2022, Stuff told the story of two young women, both of them wheelchair users with cerebral palsy, both living independently. Each of them “realistically [needed] 24 care” but while this was available to one in her own home, the other was at home alone for long stretches. “Too bad if I need to eat or use the toilet,” she said. The difference was that the one who received the care she needed was funded by ACC; the other received (inadequate) care via the Ministry of Health. Disabled people have told these kinds of stories of inequity for years.

Disabled people have tried to work with successive governments to achieve change and instead we keep getting told we are the problem. This needs to stop. Successive governments have created the disability divide and the government are the ones who can fix it. Whenever money runs low, we as disabled people are told that we are the problem, rather than the government taking responsibility for failing to address a funding model they know is not fit for purpose.

People supported by ACC, on the other hand, are insulated against sudden change by a $50 billion dollar wealth fund and an agency that is required by law to take a long-term approach to injury care. While ACC sets levies years in advance, if it gets its budget calculations wrong it’s not a disaster. ACC doesn’t need to cut funding to people to make its funding model work.

As we’ve seen in the past few weeks, the rest of us in the disability community are subject to short-term, knee-jerk policy making. When there’s an unexpected shortfall, it’s we who suffer.

The Woodhouse vision

This disability divide was acknowledged by Sir Owen Woodhouse in his 1967 Royal Commission report on worker’s compensation. The commission recognised that there was no moral justification for limitibg a system for support and rehabilitation to only those disabilities caused by injury. The logical inconsistency of only supporting injury was identified in the original report:

“A man overcome by ill health is no more able to work and no less afflicted than his neighbour hit by a car… But logic on this occasion must give way to other considerations. First it might be thought unwise to attempt one massive leap when two considered steps can be taken. Second, the urgent need is to coordinate the unrelated systems at present working in the injury field. Third, there is a virtual absence of the statistical signposting which alone can demonstrate the feasibility of the further move. And finally, the proposals put forward for injury leave the way entirely open for sickness to follow whenever the relevant decision is taken.” (Woodhouse Report, 1967 [17], page 26).

In suggesting the scheme be expanded to all types of disabilities over time, the Royal Commission recognised the need for concrete steps towards equity, rather than making the leap to a single system on day one.

The ACC scheme was set up to provide compensation and rehabilitation for all injured people, yet it is now overwhelmed by the time and labour cost of administering claims. In a system that was designed to remove the need to prove “cause”, ACC is declining thousands of claims based on exactly that. We have known for decades that ACC operates in a discriminatory manner. We know that Māori, Pasifika, women and disabled people are underrepresented among those receiving compensation. In some areas, around 80% of weekly compensation payments are made to men. Women who have long-term disabilities not covered by ACC are instead supported through the disability support system and experience worse outcomes in everyday life as a result.

The cost of administering the ACC is enormous. Each year we spend over $800 million funding a staff of nearly 5,000 people, to provide $6.2 billion in social, vocational or compensation support. A mere 5% of this administrative budget would cover the current gap in Whaikaha Ministry of Disabled People’s $2.7 billion budget, not all of which is even used for direct disability support.

In this context, the recent scaremongering over supposed misuse of disability support funds, particularly in statements from the disability issues minister, looks particularly brazen and ill-informed. It has been suggested there is insufficient oversight of disability support funding, when actually the level of oversight is arguably higher than in other government systems. It’s true that the purchasing guidelines have become more broadly interpreted in recent years – because people’s needs are more broad in terms of wellness support. However, there are checks and balances in place as to where money can be spent. Any issues can be resolved by having a conversation with those involved, and by a dispute resolution system putting decisions back into the context of people’s lives.

In the midst of the current funding crisis in disability support the most appropriate way to celebrate ACC is to reflect on its successes, its failures and whether it’s time to dust off the original vision and build something that we will be proud of when we are celebrating its centenary in another 50 years.

Disabled people and families supported under Whaikaha are currently using our energy navigating abruptly narrowed horizons. We could be having a bolder conversation instead, and reimagining disability support as a high trust model that allows people to administer funding themselves, in ways that work for them. We don’t need to overhaul the disability support funding settings. We need to address the funding model. That would be something worth celebrating.