I expected a gloomy, nineteenth-century lunatic asylum. Instead, we found a nondescript civic building with grey carpet, beige paint and IKEA furnishings. I’d never been to a total institution before. The banality was disorienting.

We were taken through a large-scale ‘mental disability institution’ in a major European city. An occupational therapist ushered us down corridors and through locked wards. Quick glances into the rooms revealed open toilets, no privacy and constant CCTV surveillance.

A Christmas decoration was stuck to one of the bedroom windows. It was June. Santa Claus’ plump gut covered extensive cracks in the Plexiglas. It wasn’t clear whether the impact of the smash had come from within the room or without. A teenage boy sat on the bed staring out at us as we passed quickly by.

The most disturbing aspect was the familiarity. The whole thing had the institutional feel of ‘community’-based disability and mental health services in Australia.

That feeling goes to the heart of why the NDIS is so important. For years, people with disabilities have lacked control over their lives, with little choice over where to live, whether to work, to marry or to have children. Degrading, group-based services push disabled people into congregated care settings that must be replaced by personalised services directed by the people receiving support themselves.

It’s not just that some ‘support homes’ in the community function as mini-institutions. Rather, whole structures of disability and mental health services operate as a sprawling constellation of services that forms a sort of shadow institution in cities and rural towns. People with disabilities and mental health issues report being segregated into day programs, ‘special’ schools, disability housing, an endless cycle of ‘work training’ (or, worse, sheltered workshops), and so on.

Organised groups of people with disabilities and their allies have been resisting the trend for decades. A broad disability movement – rallied under the slogan, ‘nothing about us without us’ – has campaigned for independent living since the ‘big bins’ first started closing. ‘Independence’ is used by this social movement not in the sense of isolated individuals, but of mutually supportive, interdependent citizens. And certainly, the aim of the NDIS is to gear support and funding toward service provision that promotes self-expression, authenticity, autonomy and solidarity.

But the NDIS poses clear risks. The system may well pave the way for a ‘user-pays’ system under the guise of progressive policy. This would contribute to what James Muldoon has described in Overland as an dangerous shift from seeing ‘welfare as a social entitlement to an increasingly privatised and individualised program of ‘conditional support.’” Others have made this argument about the NDIS and wait with to see if it will deliver on its progressive promise.

But a lesser-discussed pitfall for the NDIS relates to recent attacks on the independent advocacy of disability organisations. The Abbott government has been slashing funding for disability advocacy since it came into power, even as it remains committed to introducing personal budgets.

The first under the axe was RampUp, the ABC online media outlet which provided an unprecedented national forum for disabled commentators to debate issues. Then fell the Disability Discrimination Commissioner, cut from the Australian Human Rights Commission to make way for ‘Freedom Commissioner’, Tim Wilson. (This was despite 37 percent of complaints received by the commission relating to disability). In recent weeks, umbrella disability representative organisations have been told to re-apply for their Commonwealth funding as part of an overhaul of the Department of Social Services. By Christmas, the number of funded peak bodies looks set to be reduced by up to half the current numbers.

These cutbacks have not been tied to the NDIS in media commentary, though Christina Ryan called the connection early on in her blog. Undermining disability advocacy puts the NDIS in peril. Disability people’s organisations (or ‘DPOs’ as they’re often called) have a unique potential to keep the NDIS responsive to the needs of those it is meant to assist. DPOs can also serve as a countervailing power against the neoliberal appropriation of an emancipatory model of disability politics.

In countries with more established self-directed funding systems, DPOs have served a crucial role in making the system work. For example, the UK Trade Union Disability Alliance provided support to campaigns for fair pay and working conditions for the personal assistant and home-support workforce. Workforce representatives in turn supported the UK’s NDIS-equivalent – with similar alliances evident in the USA. Better working conditions for direct support workers benefits service users by lowering staff turnover, ensuring higher quality support, and helping develop positive relationships between workers and those they support. Elsewhere, disability people’s user co-operatives have been designed to pool individuals’ support funding to manage and hire personal assistance.

In Australia, peer support groups for personal budgets have been initiated at the local level, and larger-scale DPOs like PWDA, AFDO and Advocacy for Inclusion have been instrumental in preparing the NDIS, and guiding its early implementation. But their role will become increasingly vulnerable following recent cutbacks.

Self-directed support will likely make for more effective state spending. But independent living is not about ‘financial savings’. (This argument has been put as well as it will ever be by the Productivity Commission). But the savings argument makes for a Faustian pact. People with disabilities are marginalised socially and politically because they are seen as being marginal to productivity (even if this marginalisation is based on misplaced ideas about the potential contribution of people with disabilities). It seems crucial, therefore, to turn the debate away from questions of what is most efficient or economically viable, to notions of the public good. There’s a reason Ayn Rand did ‘not think the retarded should be allowed to come near children.’ Disability justice is always a matter of distributive politics.

Further, the disability movement can inform strategies to resist the insidious financialisation of all of our lives. Theorists and commentators bring strategies for avoiding the trend to individualise risk and potentially remove safety nets for exposed citizens, while also defending against the paternalistic over-reach of the state, or the fetishisation of productivity. On an epistemological level, the reality of disability puts paid to a myth at the very heart of liberalism that we are being born free and independent as rationalistic agents with equal capacity to give and receive goods. Instead, all humans are ‘dependent’ for large parts of our life (in infancy, sickness, in old-age). Or more accurately, all humans are interdependent to varying degrees. We are autonomous but only in a relational sense, and are vulnerable to fate and to the frailty of our bodies and minds.

In other words, much disability activism provides a roadmap for human flourishing, not just for people with disabilities, but for the world at large. If the NDIS is to be anything more than a decoration to hide further attacks on the welfare state, independent advocacy by DPOs must be bolstered. Without it, the NDIS will become a deadened institution that perpetuates neglect and segregation like the ‘big bins’ of old.