NDIS: 10 years on

Ten years have now passed since the NDIS campaign was launched by the then Chair of Yooralla Disability Services in Victoria, Bruce Bonyhady. Despite Yooralla's reputation as one of the least innovative service providers in the disability field (running, to this day, sheltered workshops and day centres), Bonyhady and four colleagues from Price Waterhouse Coopers and the NSW Motor Accidents Authority, managed to devise a scheme that appealed to governments and oppositions, policy makers, the media, disability services and funded advocacy groups alike as an apparently innovative and visionary solution to the crisis in disability support.

Despite, or perhaps because of, the limited knowledge of disability by policy makers, politicians, and journalists, the scheme was widely seized upon as a 'solution'. Members of Parliament saw a hope that parents of sons and daughters with disabilities – the biggest source of angry correspondence that many MPs received from constituents – could be assuaged. State Ministers for Disability Services hoped that a national (read 'centralised') scheme would allow perennially stretched state budgets to be eased. Services, activists and journalists were persuaded that an 'insurance model' of financing support, drawn from state motor accident insurance schemes, would be a superior system to short-term rationing of resources. All the institutional players in disability services expressed the hope that a 'modern' system of 'professional' support would replace one that was built on 'charitable' sector organizations.

NDIS commenced in 2013 and has been 'rolled out' over the last six years. The promise to Revolutionise Disability Services was good marketing when the campaign was launched – it appealed to those who knew the disability system was dysfunctional – but the phrase has been quietly dropped and is no longer used.

Today, it has become clear to many people with disabilities and their families and friends, and belatedly to some policy makers, that NDIS is a highly bureaucratised, centralised and costly scheme that requires significant adjustment and reform if it is to achieve its stated goals. These goals are to fund the supports and services that people with disabilities need to:

• achieve individual goals
• become as independent as possible
• develop skills for day-to-day living
• participate in the community
• work and earn money

To achieve these goals, NDIS was established as a conventionally structured statutory authority, with a conventional managerial culture, with a brief to centralise the financing, planning and delivery of diverse and decentralized supports for 490,000 people in their diverse, decentralized, largely hidden and informal communities. It is hard to conceive of an organizational structure and business model that could be less fit for purpose.

NDIS works like this. A team of NDIS 'planners' produce an individual plan for each participant in the scheme, which specifies the portfolio of external supports they deem necessary for participants to achieve their individual goals and become as independent as possible in daily living. Allocations averaging about $35,000 annually are assigned to each plan. In theory, participants have a right to self-direct the allocations of this money (deciding on how it is spent, through their preferred providers), and a right to self-manage (making the purchases of support and transactions themselves, online or manually).

In practice, the exercise of self-direction is severely constrained by the weight of historical patterns of service delivery and established market players. Established service providers retain excessive influence in the preparation of individual plans, and retain most if not all of the co-ordinating functions for themselves (which are paid for out of the average $35,000 allocation to each NDIS participant). These providers supply support workers at a charge-out rate of up to $70 per hour. Participants who self-manage their supports are able to cut this rate to around $30 per hour. Today, after ten years of operation, less than 3% of NDIS participants self-manage their supports, a figure which is identical to the number who self-managed in the decade preceding NDIS. The NDIS now actively discourages self-management through the introduction of multiple administrative hurdles for those taking this option.

Online self-management of financial transactions is now extremely common in banking, retailing, entertainment and leisure industries. To most outside observers and families of people with disabilities, participant-directed online systems for the self-management of individual NDIS plans should have been one of the first things put in place in NDIS. To date, billions of dollars has been spent by NDIS establishing ICT systems for service providers, which will be used exclusively by service providers in gathering data for NDIS. The NDIS still has no plan for a 21^st century management system for participants and their families to self-manage. Despite the language of 'person-centred' methodologies, the operational culture of NDIS is firmly 'provider-centred' in practice.

These features of NDIS were anticipated by many disability activists and families from day one of the NDIS campaign. The five individuals who devised the scheme were drawn exclusively from the ranks of career bureaucrats. When world-weary families of sons and daughters with disabilities expressed fears in 2010 and 2011 that creation of a mega-bureaucracy with a mega-budget would not be a solution to the systemic dysfunction they experienced daily, they were ignored by the industry players whose eyes had begun to light up at the prospect of more funding.

Many outsiders are astonished to learn that the model underlying NDIS was subject to no consultation or critical assessment from the disability sector. The so-called 'grassroots' campaign for NDIS consisted of the mobilization of individuals, families and services to 'sign-up' to support NDIS and to write letters to members of parliament, but the organizational and business model was quarantined from scrutiny. Critics of the model were bullied into silence. Campaign funds came freely from service providers, through a levy on services exacted by the peak provider body, National Disability Services. Many providers redirected money from charitable donations earmarked for children with disabilities to what was effectively a political campaign.

Given the parlous state of disability supports, and the resources thrown into the campaign by service providers, it was not surprising that a scheme offering comprehensive change was welcomed. What was not predictable was the way the disability sector swallowed (hook, line and sinker) a flawed, bureaucracy-riddled, centralised model of reform. The activist physical disability groups suspended their "nothing about us, without us" approach to allow a scheme to be introduced without their input. This was extraordinary, given that on every small issue of disability awareness, the activist physical disability groups demand a say, and often, a veto, yet on the biggest of all issues to confront them in a century, they signed up knowing nothing about how an NDIS would work (there was no fine print to read).

Consultants in the field knew NDIS would be a gravy train, and threw themselves into the campaign. Small innovative brokers and support coordinators with a stronger commitment to the 'personalisation agenda' in social policy were more sceptical on seeing the big traditional providers pour money into the campaign, but they nevertheless felt drawn to be inside the tent. Across the board, dissenting views about the NDIS model were rejected by industry and advocacy organisations who wanted more money to flow into their "sector", whatever the implications might be.

The supreme irony in all of this is that innovative person-centred practice had been undertaken quietly and selectively in various parts of Australia from the mid-1980s with negligible cost to the taxpayers, which state and federal governments could have championed and replicated if they wished. They didn't. Two examples are worth citing.

Mamre Family Association in Brisbane is an innovative family-based provider of disability supports established in the early 1980s, influenced by the work of French Catholic philosopher Jean Vanier. Vanier's work emphasizes informal and natural supports for people with disabilities, in families and neighbourhoods, rather than formal, professionalized services. From the late 1980s, Mamre (a Hebrew word meaning 'mountains of friendship') enabled families in Brisbane to self-manage an individualised package of supports and directly select and employ their own support workers. It did this while in receipt of conventional block funding: Mamre took the money from government and arranged it in individualized formats for families to administer and allocate in purchasing their preferred supports. Mamre's role was to advise and enable. It absorbed the costs of introducing this new paradigm of personalized support without any additional expenditure of taxpayers' money. Sadly, Mamre like many other innovative, community-based organisations has had to re-work its personalised, lean and efficient methods in order to accommodate the cumbersome and costly methods that NDIS requires.

In East Gippsland, a remote part of Victoria, families with sons and daughters with disabilities were permitted by the Department of Human Services in the 1990s to cash-out an individualised package to innovate in obtaining supports from unconventional sources. They were permitted to employ neighbours and family members to provide support, even though users of services in other parts of the state were not permitted to do so. It was accepted that remote circumstances required a 'bending' of normal processes in order to make do. City users of services were not permitted the same flexibility. Indeed, the Department insisted that East Gippsland people didn't publicise their 'personalised' arrangements in the 1990s lest city people requested the same flexibilities.

Personalised, self-directed disability supports like these in East Gippsland and Brisbane could have been deepened and extended around the country, without a mega-statutory authority with a mega-budget. But policy makers, politicians, and journalists with their limited knowledge of disability weren't aware of these quiet, intimate innovations. The model of 'reform' they were accustomed to required legislation, statutory authorities, managerial cultures and public relations campaigns. NDIS, to them, looked more like 'real' social reform than suburban families quietly selecting and employing their own support workers, in their own names, to coach their sons and daughters in forming social relationships and living as independent a life as possible.

What we got in 2013 was NDIS at a set-up cost of $37 billion, instead of a thousand, no-cost, family and peer-generated Mamres. This was a wrong turn of enormous magnitude, but the political class is still largely unaware of their blindness.

What then is to be done, ten years on?

Though belated, we now need to have the debate about preferred models of disability support that we didn't have in 2010. Four starting points are essential for this debate:

The first is that support systems need to be built around familial and natural support systems (families, friends and neighbours) and not in place of them. NDIS activists and management alike assume paid, formal supports are primary in importance, and that familial care is secondary. This assumption is fundamentally flawed, but it lies at the root of the NDIS model.

Second, the financial cost of NDIS is hugely excessive, in large part because of the ideological preference for the paid and formal rather than the familial and informal. Because no politicians or journalists have been prepared to state this honestly, they have been unable to address the burgeoning, and ultimately unsustainable, cost of NDIS.

Third, NDIS is not an 'insurance' scheme, because there is no self-financing contributory mechanism drawn from the pool of the insured. Policy makers, service providers and journalists colluded in misrepresenting the scheme as an 'insurance' scheme, and after then years of doing so they should stop - this perpetuates the wildly inaccurate perception that the scheme is self-financing and sustainable.

Finally, politicians need to grow a spine and begin speaking honestly about a scheme they know to be excessively bureaucratic and costly. They should sit down at kitchen tables with the parents of sons and daughters with disabilities who tried to tell them this ten years ago.