ARPA: Australian disability reform and political participation

Gerard Goggin, The University of Sydney
Dinesh Wadiwel, The University of Sydney

INTRODUCTION

The National Disability Insurance Scheme (NDIS) is an epochal reform in Australian social policy. The NDIS provides, on an entitlement basis, lifelong care and support to people with disabilities (National Disability Insurance Scheme Act 2013). Articulated by the Rudd and Gillard Labor governments, and supported by all Australian political parties, the NDIS has been confirmed in the May 2014 Budget by the Abbott Coalition government. Funding is planned until 2018–19, and implementation is proceeding.

The NDIS is a key plank in the National Disability Strategy 2010–2020, a cross agency cross jurisdiction agreement between all federal and state governments (Council of Australian Governments 2011). While the Strategy is the overarching Australian policy approach to disability, the NDIS is its most prominent—if not iconic—contemporary element. As such, the NDIS has been widely debated, because its architecture, implementation, and implications, hold considerable importance for disability and indeed Australian social policy in general.

In many respects the scheme represents an extraordinary development in contemporary Australian social policy. Firstly, there were significant problems with previous arrangements for disability support. For example, before the advent of the NDIS, care and support services for persons with disability in Australia was severely underfunded, which has meant that though many persons were eligible for services, very few actually got the support they needed (see, for example, Australian Institute of Health and Welfare 2007; National People with Disabilities and Carer Council 2009; Productivity Commission 2011). A number of inconsistencies plagued the delivery of disability services, including lack of portability, which meant that persons with disabilities risked losing support services when they moved (National People with Disabilities and Carer Council 2009, pp. 20–21). The NDIS addressed these problems by shifting care and support services to a nationally consistent lifetime entitlement.

Secondly, the NDIS arguably represents the most significant new universal entitlement scheme since Medicare. Given general trends away from universal social supports within welfare policy in Australia, it seems certainly worth noting that the NDIS appears, at least on the surface, to go against these trends.

Finally, the NDIS is, at least rhetorically, informed by a rights approach, in the form of the United Nations Convention on the Rights of Persons with Disabilities. The NDIS legislation specifically states an aim to ‘give effect to Australia’s obligations under the Convention’ (National Disability Insurance Scheme Act 2013, Part 2, section 3, ‘Objects …’) and cites other international obligations, such as that under the International Covenant on Civil and Political Rights. While other pieces of Federal legislation are informed by Australia’s international obligations—including notably the Sex and Race Discrimination Acts—it seems to be a powerful development to see a social support scheme based on an explicit commitment to give effect to equal rights to social and economic participation as defined in the international instrument.

In our view, it is important to see the NDIS within the wider context of the dynamics of disability and social policy. Social policy reform, such as the National Disability Strategy and the NDIS, have their specifically Australian dimensions. But it is also informed and shaped by international logics of disability and power, and paradigms of social and disability policy (Pothier & Devlin 2006; Rimmerman 2012; Roulstone & Prideaux 2012; Soldatic, Morgan & Roulstone 2014). Despite the promises of contemporary Australian reform, there are real issues about how it will advance genuine participation, justice and equality when it comes to disability (cf. Clear 2000).

We suggest that the reckoning of Australian disability and social policy has squarely to do with the issue of political participation. Political participation rights for persons with disabilities are not frequently the focus of policy and research attention: an audit of Australian disability research in May 2014 found that the area of community and civic participation was significantly underrepresented in the research base (Centre for Disability Research and Policy 2014). The right to political and public participation is a key article in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (article 29) (on the Convention on the Rights of Persons with Disabilities, see Arnardóttir & Quinn 2009; Flynn 2011; O’Mahony & Quinn 2015).

Though it is not our main focus here, it is important to note that the right to political and public participation crucially interacts with article 21, which deals with freedom of expression and opinion, and access to information. In actual fact, article 21 is the most explicit of various articles of the CRPD that implicitly touch upon, extend, or create new dimensions of communication rights (Goggin 2015; Hoffman & Dakroury, 2013; Padovani & Calabrese 2014). Both articles 21 and 29 are based on traditional civil and political rights, suggesting that states have an immediate obligation to respect these rights, as opposed to economic, social and cultural rights which ordinarily may be progressively realised as states attain the resources to meet their obligations (see Kayess & French 2008, p. 29). In other words, having ratified the CRPD, Australia must take all steps to fulfil its obligations under articles 21 and 29, ensuring rights to communication and political participation for persons with disabilities.

So, with articles 21 and 29 in mind, this paper seeks to take seriously the coupling of rhetoric and reform in the rubric of this Symposium, with the aim of trying to locate a role for the NDIS in promoting civic and political inclusion for persons with disabilities.

NDIS: BROAD ENOUGH FOR POLITICAL PARTICIPATION?

One of the early sites of political contestation in relation to the development of the NDIS was the question over which supports would be considered ‘reasonable’ to be provided by the Scheme (see Productivity Commission, 2011). After a public review conducted by the National Disability Insurance Agency, the supports that are now considered ‘reasonable and necessary’ are largely restricted to those supporting ‘daily personal activities’ and employment related support (see National Disability Insurance Scheme Act 2013). This would, on the face of it suggest that there is little scope for imagining an NDIS that supports political participation.

However, the Scheme itself is arguably underpinned by a broader vision, at least in so far as it aims to facilitate full social and economic participation of people with disabilities. Certainly, the enabling legislation for the NDIS, the National Disability Insurance Scheme Act (2013) includes various objects that touch upon participation:

A number of important principles are also set out, to guide actions taken under the Act. These include:

Although we acknowledge that the current understandings of ‘reasonable and necessary supports’ do not necessarily extend to thinking about the role of persons with disabilities in the political sphere, we suggest that the broad intent of the scheme—to enable independence, control, social and economic participation, rights to choose and rights to be supported—all indicate an interconnection between the scheme and basic rights to civic and political participation. If the NDIS aims to address the social and economic barriers that prevent persons with disabilities participating on an equal basis with others, then why is it not reasonable and necessary for political participation to also be addressed?

REPRESENTATION AND ADVOCACY

Many commentators have noted that the NDIS represents an important moment in Australian society and social policy. Formerly on the margins of policy discussion, disability is now centre-stage. However, this does not mean that people with disabilities themselves have been placed at centre-stage. For NDIS to achieve its objectives, as well as the wider National Disability Strategy, people with disabilities will need to be integrally involve—at all levels.

Fundamentally, this involves questions of power. Simply put, people with disabilities need to be able to participate, equally and democratically, in Australian society. They especially need to be able to exercise power when it comes to decisions that affect their lives. This includes, but is not limited to: parliamentary representation; key roles in executive government; management and employment at all levels in the National Disability Insurance Agency, and NDIS disability service provider agencies; a well-resourced, independent and vibrant disability representational and advocacy organisation; and ability to exercise political rights in everyday life, as well as public life. This is our operating definition of political participation in relation to disability, which we enrich and complicate as we proceed (cf. Campbell & Oliver 2009; Erevelles 2009; Prince 2009; Russell 2011; Shakespeare 2014; Withers 2012).

Important dimensions of these issues of power are highlighted in a thoughtful collection of articles on mental health consumers and the NDIS. In his contribution, Frank Quinlan, chief executive officer of the Mental Health Council of Australia, notes that ‘The mental health sector stands ready to assist governments to realise the possibilities that the NDIS represents. The scheme has the potential to correct historic injustices and to meet Australia’s obligations under the (CRPD)’ (Quinlan, 2014, p. 37).

Here Quinlan captures one of the central features and tensions in the NDIS, and indeed contemporary disability in social policy (Yeatman et al. 2009). Namely, that the present conjuncture calls for individuals with disabilities to be put at the centre of social policy and programs, as a hallmark for how to evaluate their effectiveness. Given the inherent complexity in many cases of managing one’s own disability—which often involves articulating needs, desires, and expectations, and navigating complex support options and systems—innovative systems and approaches are required (Bigby 2013; Foster et al. 2012; Williams & Smith 2014). Key to this is the role of the consumer and citizen herself or himself, supported by the workers, advisors, friends, communities, and social, service, advocacy and political organisations in which they are embedded (Fisher et al. 2013; Priestly 1998).

The role of advocacy for effective political participation is at set out in the National Disability Insurance Scheme Act 2013 itself, especially in the remarkable principle endorsing disability advocacy:

While political participation is not adduced here, there is a specific reference earlier (Objects, i) to the International Convention on Civil and Political Rights, as well as other treaties. Political participation is also clearly spelt out in the CRPD, and with that the interconnected role of groups representing people with disabilities, such as advocacy organisations (see article 29b[ii]).

It is worth noting here that advocacy remains one of the contentious issues in the NDIS. At the time of the Productivity Commission Review into the viability of the Scheme, several advocacy groups (see, for example, People with Disability Australia 2011 and Wadiwel & Australian Federation of Disability Organisations 2011) and the Australian Human Rights Commission (Australian Human Rights Commission 2011), raised concerns about the failure of Productivity Commission to recognise the importance of resourcing for advocacy in enabling people with disabilities to realise their rights under the proposed Scheme.

Historically, individual forms of independent advocacy have been crucial in enabling persons with disabilities to address barriers and discrimination, and in facilitating access to services. Systemic advocacy has similarly been important in building the voices of people with disabilities to achieve social and political change, including significant social policy reforms (indeed, such as the NDIS). The NDIS in its present form does not directly fund either independent individual advocacy or systemic advocacy on behalf of people with disabilities. While the new Scheme offers assistance to people to navigate the system, this arguably does not replace the need for independent advice and support, particularly in the face of a complex new system. For this reason some advocacy groups, such as the Disability Advocacy Network Australia (2013), have strongly argued that the advent of the NDIS calls for additional resources for advocacy to enable ‘people seeking to access the scheme, secure needed supports, and to assist marginalised people to identify the aspirations they hope the NDIS will help them achieve’. Moreover, as one might expect, many people with disabilities are not actually embedded in advocacy and political organisations. Thus the extent of interdependency that full participation requires is much more complex than we yet understand—and requires considerable will, focus, and resources to explore and address.

HOW MIGHT THE NDIS SUPPORT POLITICAL PARTICPATION?

In August 2013, the Disability Rights Research Network at The University of Sydney held a roundtable discussion with Disabled People’s Organisations (DPOs)—including People with Disability Australia, Women with Disability Australia, the Australian Federation of Disability Organisations, and First Peoples Disability Network Australia—and key disability researchers to discuss political participation rights for persons with disabilities. The roundtable highlighted a range of key concerns relating to political processes that have been on the agenda of disability advocates for many years, including the relatively poor accessibility of polling stations (see Killesteyn 2013) and the lack of government support for more accessible forms of polling, such as electronic voting (Joint Standing Committee on Electoral Matters 2005). In addition, roundtable participants discussed a number of broad ranging issues that highlighted the potential intersection points between the NDIS and communication and political participation rights.

Firstly, access to communication, and support for communication needs, sit at the heart of enabling political participation. For example, the availability of Auslan and other sign languages is essential to allowing the deaf community to participate in political processes. Roundtable participants emphasised that this right needed to be understood broadly: members of the deaf community have a right to access all aspects of Australia’s political process, including parliamentary question time, and key fora for the debate and exchange of ideas, such as the National Press Club. The NDIS clearly has a role here: its mandate for supporting participation of persons with disabilities should include facilitating the communication needs of individuals within the context of political participation.

Secondly, there was a strong understanding of the need for persons with disabilities to be able to access education and training to build the skills and abilities necessary to participate in political decision making and processes. Persons with disabilities have been actively excluded from social and political life, through institutionalisation, forms of segregation (such as in education), systemic poor accessibility to the built and informational environment, and through stigma. Many persons with disabilities are denied rights to make decisions about their own life, and do not have their legal capacity recognised by law (Australian Law Reform Commission 2014; see also Commissioner for Human Rights 2012). Many persons with disabilities require support to overcome the effects of these deeply entrenched forms of disadvantage upon their ability to advocate for themselves, express political views and actively participate in political processes; arguably there is a role for the NDIS in supporting this education and training.

Thirdly, article 29 of the Convention on the Rights of Persons with Disabilities recognises a role for governments in encouraging persons with disabilities to form and join ‘organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels’. In this guise, political participation is not merely about access to existing political processes, but also about the creation of new resources to allow persons with disabilities to form and control groups which speak on behalf of persons with disabilities at all levels (in the words of the global disability movement: ‘nothing about us without us’). Where disability advocacy has previously focused on individual and systemic action to improve the responsiveness and resources of the disability services sector, arguably the rise of the NDIS creates opportunities for advocacy to assume a more political function in allowing persons with disabilities to autonomously shape political process, and have a voice in government at ‘international, national, regional and local levels’ (see Shakespeare 1993). On this point, roundtable participants were clear that support for advocacy does not stop within the borders of Australia; funding for advocacy at a regional and international level was vital (for example, support for advocates to influence international governance institutions such as the United Nations).

Finally, many roundtable participants were acutely aware of the intersection between core economic, social and political rights and rights to political participation. Given the startling levels of poverty experienced by persons with disability in Australia (Brown 2013) and internationally (see World Health Organization 2011), it is difficult to imagine how persons with disabilities might have the resources to participate on an equal basis within political processes or have their rights to communication (and to be heard) meaningfully realised. It is here that the proposed tightening of the Disability Support Pension (DSP), which is likely to further exacerbate financial hardship for many persons with disabilities, runs at cross purposes with societal goals to improve rights to political participation.

We would like to emphasise the importance of this last point, and reinforce the need to understand how the proposed welfare reforms will interact with the introduction of the NDIS. Certainly, if the federal government proceeds with foreshadowed changes to the DSP, there are real prospects that such foreshadowed changes could undermine improvements in the lives of people with disabilities provided by the NDIS. The seeds of the Coalition’s changes to the DSP lay in its philosophical position, enunciated in its only other reference to disability in its Real Solutions election manifesto, ‘We will adopt a smarter approach to the disability pension that distinguishes between disabilities that are likely to be permanent and those that are not, which will help to prevent older unemployed people being parked on welfare’ (Liberal Party of Australia 2013, p. 21).

The Coalition’s changes to the disability pension were signalled in Treasurer Joe Hockey’s budget speech, concluded with the rhetorical flourish characterising Australians: ‘We are a nation of lifters, not leaners’ (Hockey 2014).

Potential further directions for the Coalition were canvassed in the recommendation of the June 2014 Interim Report of the government’s Reference Group on Welfare Reform (led by Patrick McClure) that ‘A Disability Support Pension would be reserved only for people with a permanent impairment and no capacity to work’, whereas ‘People with disability who have current or future capacity to work could be assisted through the tiered working age payment to better reflect different work capacities’ (McClure Review 2014, p. 6).

These recommendations have been widely criticised, but, at present, have a strong likelihood of implementation. Such directions are not surprising, if placed in a longer historical and policy context—for instance, the Howard Coalition government’s approach to disability, welfare, and work (Soldatic & Pini 2010). In this sense, the proposed changes (both to the NDIS and the Disability Support Pension) might be read as part of wider government policies restructuring welfare around ‘incapacity to work’. They signal the significant challenges ahead for people with disabilities, not only in being able to sustain life above the poverty line, but also in being able to meaningfully participate in civic and political life.

CONCLUSION

Much is yet to unfold concerning the realities of what the NDIS will offer Australians with disabilities, and society at large—and the extent to which the NDIS will deliver transformational change. There are also complex, significant questions concerning the interaction among the NDIS and other parts of the Australian disability social policy puzzle. As we have stated, there are real prospects that such foreshadowed changes to the DSP could run against any improvements in the lives of people with disabilities provided by the NDIS. In addition, there are a range of other changes that interact with social policy, including the downgrading of the Disability Discrimination Commissioner to an ‘Acting’ position, the closure of the Australian Broadcasting Corporation’s Ramp Up disability specialist website (Ellis & Goggin 2014), and projected changes to education in schools, TAFE and universities. All these changes are likely to have a deleterious effect on political participation; we further suggest that these developments are themselves a sign of a political culture that continues to lock out people with disabilities.

As stated above, the supports that are now considered ‘reasonable and necessary’ under the NDIS are largely restricted to ‘daily personal activities’ and employment related support (see National Disability Insurance Agency 2013). It is an open question whether the NDIS has a future mandate to allow persons with disabilities to politically participate on an equal basis with others, both through individual supports to communicate and give voice, and through systemic change to our political system itself.

A national disability support scheme, particularly one designed to ‘give effect to Australia’s obligations under the Convention of the Rights of Persons with Disabilities’ (National Disability Insurance Scheme Act 2013, Part 2, section 3, ‘Objects …’) must provide all supports necessary to enable full participation and enjoyment of rights for persons with disabilities (see Wadiwel & Australian Federation of Disability Organisations 2011). If we accept that persons with disabilities are locked out of opportunities by social structures which prevent equal participation on the same basis as others, then schemes such as the NDIS have a potentially broad mandate which does not stop merely at personal care and support or employment support. On the contrary, there is a role for the NDIS in supporting persons with disabilities to take an equal place as political and civic decision makers.

ACKNOWLEDGEMENTS

The Disability Rights Research Network is an initiative of Gerard Goggin and Dinesh Wadiwel in collaboration with People with Disability Australia, and is resourced by the Sydney Social Justice Network, Faculty of Arts and Social Sciences, University of Sydney. We thank Ms Kathryn O’Shea, an intern with The University of Sydney Master of Human Rights program, for her support in developing the roundtable. We thank Ms Madeleine Wonders, an intern with The University of Sydney Master of Human Rights, who is currently completing research building upon the roundtable findings.

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Gerard Goggin is Australian Research Council Future Fellow and Professor of Media and Communications, The University of Sydney. He is well-known for his work on disability, including, with Katie Ellis, the books Routledge Companion to Disability and Media (2016) and Disability and the Media (2015), and with the late Christopher Newell, Disability in Australia (2005), and Digital Disability (2003). For details of his Future Fellowship project on disability, digital technology and human rights, see http://disabilitydigitaltech.net.

Dinesh Wadiwel is Director of the Master of Human Rights at The University of Sydney. He has over 15 years’ experience working in the non-government sector, and was a previous Senior Policy Officer at the Council of Social Service (NCOSS) and Executive Officer of the National Ethnic Disability Alliance (NEDA). Dinesh’s research interests include sovereignty and the nature of rights, race and critical animal studies. He is author of the forthcoming book The War Against Animals (2014).

View other articles in this symposium:

Welfare for Some, Illfare for Others: Social Policy and the Abbott Government Greg Marston
What Tony Abbott Talks About When He Talks About Welfare Gabrielle Meagher and David Wilkins
Using and Ignoring Evidence: The Case of Australian Child Support Reform Kay Cook and Kristin Natalier
Why Can’t We Have a Simple Welfare System? Don Arthur