It is not uncommon to hear NDIS referred to as ‘the most significant social reform in Australia since Medicare’. The campaign for NDIS is frequently cited as a ‘model’ of grassroots campaigning. Bill Shorten’s sponsorship of the disability sector’s mobilisation is often presented as vindication of the enduring value of trade union organizing techniques when applied to social reform.
Six years have now passed since the NDIS campaign was launched by the then Chair of Yooralla Disability Services, 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 and disability services, 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 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 they received from constituents – could be assuaged.
Bonyhady is now the Chair of the National Disability Insurance Authority(NDIA), overseeing the implementation of NDIS that will cost something in the vicinity of $37billion to set up, with an annual cost of $22bn thereafter. The scheme commenced in four ‘trial site’ locations in 2013, with the full national rollout due to be completed by 2018-19. 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 – and the phrase is still used in 2015.
But today, it has become clear to many people with disabilities and their families and friends that NDIS requires significant review, adjustment and reform if it is to achieve its stated goals. Those 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 revolutionary goals, the Commonwealth established a traditionally structured statutory authority, with a traditional managerial culture, to ostensibly enable people with disabilities to live more independently in their small and informal communities. Whether this structure and business model are fit for purpose is another thing. $750 million, for example, has been spent to date on ICT systems, none of which will be available for people with disabilities or their families to use in managing their supports, but will be used exclusively by service providers in gathering data for the NDIA. Despite the language of ‘person-centred’ methodologies, the operational culture of the NDIA is firmly ‘provider-centred’ in practice.
For many users of services and families, the emerging features of the ‘revolutionary’ NDIS seem to include:
- Excessive bureaucracy and red-tape and insufficient flexibility
- Too little scope for individuals and groups to innovate
- Lack of person-controlled technology to assist individuals to self-direct
- Doubts over the financial viability of an uncapped scheme and fears of service rationing
- Concerns that small support organisations are disadvantaged in relation to big providers
- Fears that Local Area Coordination will repeat the old provider-centred failings
- Too little financial transparency in the costs/expenditures of the scheme
- Concerns that provider-centred cultures are reappearing
- Insufficient recognition of peer-based and family-based supports and networks
All of these features were apparent to many disability activists and families from day one of the NDIS campaign. Many outsiders are quite astonished to learn that the model underlying NDIS was subject to no consultation or critical assessment from the outset. The much-lauded grassroots campaign for NDIS consisted of the mobilization of individuals, families and services to ‘sign-up’ to support NDIS and to write letters of support to members of parliament, but the organizational and business model was quarantined from scrutiny. Campaign funds came freely from service providers, through a levy on services exacted by their peak industry body, National Disability Services. The provider peak employed John Della Bosca, an accomplished Labor Right apparatchik to get Labor governments on side (the fact that Della Bosca was an unpopular Minister for Disability Services in NSW with people with disabilities and families didn’t seem to detract from his suitability for the role).
Given the parlous state of disability supports when NDIS was launched, and the resources thrown into the campaign by the industry providers, it was not surprising that the scheme was welcomed. What was not predictable was the way the disability sector swallowed (hook, line and sinker) a flawed 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. Consultants in the field hoped the NDIS would be a gravy train, and they’ve been right. Small innovative brokers and support coordinators are now being marginalised in the trial sites by the big providers who funded the NDIS campaign. Dissenting views about the NDIS model were rejected by industry and advocacy organisations who wanted more money to flow into their “sector”, whatever the price.
As an exercise in social reform, grassroots campaigning, and organizing techniques, NDIS has been a salutory experience in how not to reform social policy and service delivery. The supreme irony 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. From the late 1980s, it enabled families to 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: it took the money 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 is now having to re-do its innovative, 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 where they could. 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 usersof services were not permitted the same flexibility. Indeed, the Department insisted that East Gippsland people didn’t publicise their ‘personalised’ arrangements lest city people asked for the same flexibilities.
Personalised, self-directed disability supports like these could have been deepened and extended around the country, without a mega-statutory authority with a mega-budget. But the policy makers, politicians, journalists – and ex-trade union officials – 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. What we got was NDIS. And now people with disabilities and their families must start our reforming work all over again.