Equal but different

With the launch of the new national insurance scheme, DisabilityCare, disability is for once high on the public agenda. Many Australians now agree that the previous system failed those in need and they thus support this long-overdue reform. What is more, there is finally real money on the table, money that can help address the entrenched disadvantage experienced by people with a disability.

But what will DisabilityCare really do? Or, more to the point, what will it do differently?

At the heart of the new scheme is an anachronistic concept of disability support that – while still providing benefits for individuals – may hinder future attempts to tackle the wider social exclusion of people with disabilities. The scheme’s relationship to marketisation and privatisation firmly positions it as a neoliberal enterprise, something that has garnered scant, if any, critical attention. As such, a close look at the scheme’s underlying conceptual framework – and how this deviates from earlier support systems – is necessary to understand both the positive and potentially negative aspects.

Ways of thinking about disability have shifted over time. Until quite recently, disability was seen as a private matter, as something to be hidden: disabled people were seen as wrong or broken, with a body or mind that needed fixing. The accepted approach was medical or charitable, with an individual’s impairment the primary focus.

The medical/charitable approach was challenged in the 1980s with the emergence of a social model of disability. According to this approach, disability is created by social and cultural structures rather than by physical or mental impairments themselves. The world is designed for able bodies; there is no room for those who do not fit the norm.

In her book The Rejected Body, Susan Wendell expounds on the roots of abelism:

Societies that are physically constructed and socially organised with the unacknowledged assumption that everyone is healthy, non-disabled, young but adult, shaped according to cultural ideas and, often, male, create a great deal of disability through sheer neglect of what most people need in order to participate fully in them.

Situating a person’s disability within broader oppressive structures – that is, separating disability from the specifics of impairment – immediately shifts the focus from an individual to a society. A person with a disability should have the same rights as everyone else but is denied access to these rights by the world at large. Dr Raymond Lang, an expert in international disability policy, neatly summarises the significance of the conceptual shift: ‘in focusing upon the manner in which disability is socially produced, the social model gives precedence to the importance to politics, empowerment, citizenship and choice.’

Disability advocacy groups soon adopted this model: that is, they shifted their political strategy outwards onto the limitations of the world instead of the limitations of individuals. The positioning of disability within the environment and societal attitudes allowed a rights-based paradigm to emerge, in turn leading to laws against discrimination and other significant changes.

Yet despite the significant gains it has enabled, the concept is not without critics. The main flaw, many argue, is that the nature of a person’s impairment and its real – and in certain circumstances, difficult or painful – impacts are absent. In short, the social model can deny the actual experience of disability.

As artist-activist Liz Crow notes:

We align ourselves with other civil rights movements and we have learnt much from those campaigns. But, we have one fundamental difference from other movements, which we cannot afford to ignore. There is nothing inherently unpleasant or difficult about other groups’ embodiment: sexuality, sex and skin colour are neutral facts. In contrast, impairment means our experiences of our bodies can be unpleasant or difficult. This does not mean our campaigns against disability are any less vital than those against heterosexism, sexism or racism; it does mean that for many disabled people, personal struggle related to impairment will remain even when disabling barriers no longer exist.

My own experience of disability – as ordinary, uninspiring, messy and unpredictable – accords with Crow’s comments.

I first got sick in 1991. A small rash grew and spread until I was hospitalised. Once for weeks, then again for months. My body was rebelling against its ordered nature. It turned on itself. My immune system attacked my body; my own cells became an enemy to eradicate.

I was nineteen when I first stood behind flimsy curtains, nurses smearing potions across my skin and then wrapping me, head to toe, in bandages. My skin shed like a snake’s; my broken body left flakes wherever I went. Skin so fragile from over-enthusiasm that it bled when barely touched.

I have been disabled for over half my life, moving between the able and the crippled worlds with random predictability. My body devoured itself over and over, only to be created anew with the application of yet another wonder drug. Each time I expect it to be the last; each time I am wrong; each time I am broken open and apart. Now the shards are barely holding together – another immune hammer will perhaps shatter them for good.

As I have grown older, grumpier, uglier, I have come to see the able-bodied world in stark relief. Pictures of me as a young woman show me defiant: psoriasis-covered legs poking out from short skirts; hair dyed pink to match my skin. I dived into work and study; each time I had to stop. This psoriasis flare, I told myself, is surely just temporary, and definitely the last. I dared the world to comment, to say something about how I looked just so I could tell it to fuck off.

A decade ago, that changed. My over-enthusiastic immune system kicked the arse of the last available drug. I was stuck. Stuck in the house. Stuck covered in psoriasis – head to toe, inside and out, bones groaning.

My defiance melted away.

My body didn’t comply. It didn’t respond as the textbooks said it should. It baffled the doctors and other boffins who took bits and pieces from it. My cells continued to wage war on themselves, my immune system constantly fighting a home-grown enemy. I was photographed and filmed; the hospital became my second home.

And I hated it. I hated every second of it. I hated being in pain. I hated people staring at me. I hated that I shed so much skin. I hated that I couldn’t walk properly, if at all. I hated that I couldn’t have the life I saw all around me. And because I hated it, because I was angry, because I despaired, I believed I deserved nothing. Because only nice, smiling cripples get help.

I used to cry after the nurse left each morning. Cry of shame at my filthy flat; every surface covered in skin or slimy with ointment residue, dishes layered in the sink. Cry in pain as the strict self-control needed to endure the dressings faded. Cry in exhaustion after the two hours it took to get showered before she came. Cry in despair that I would ever be well again.

When I first discovered the social model of disability, there was at last relief from all this hate. Because if it was the world that didn’t fit my malfunctioning body, then perhaps it wasn’t my fault that things were so hard. Perhaps there were other answers to the questions I was asking, answers that was not about what was wrong with me. Perhaps the struggle I had to access the supports I needed were about the system being broken, not because I didn’t deserve them. Perhaps the people staring at me were doing so because of their prejudice, not because I was revolting. Perhaps, perhaps, perhaps.

But it many ways, the old way of thinking persisted. I had become my own personal medical model: something to be repaired, to be changed, to be mended. My body rebelled in its aberrant abundance and refused to be quiet, shouting its deficiencies through the very nature of its flaws.

My broken body did not fit into the world – and the world wasn’t too keen on me either.

Understanding the social model of disability did little to change the experience of my malfunctioning body. On an intellectual level, I could see that the stairs to the train station restricted my ability to participate in the world, but knowing that didn’t make the stairs magically disappear, nor my legs more able to climb them. I still struggled with shame, with a sense that I was wrong, that if I had a ‘better attitude’, my disability would not be so hard. The people with a disability profiled in the media started foundations or ran public awareness campaigns or lobbied politicians, but I did none of these things. Therefore, I believed, I didn’t deserve change.

Speaking on ABC’s Ramp Up, activist Stella Young noted the negative effects of ‘inspiration porn’ on people with disability. She argued that such stories of triumph often lead to feelings of self-hatred and guilt, while also unintentionally perpetuating stigma.

Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be ‘bad’ disabled people. We wouldn’t be doing our very best to ‘overcome’ our disabilities.

I knew these feelings all too well.

The social model gave me answers to questions I had barely been aware I was asking. It took the focus off my own personal failings and allowed me to situate my disability within the wider context. But it didn’t provide all the answers. I was still sick, still in pain, still without the basic services that would have made my life easier.

So how does my own story, my personal struggle to understand disability, relate to the new system of disability support? The real tensions between addressing individual impairments and challenging the social and environmental factors that contribute to the experience of disability are present both in my own story and in the narratives around DisabilityCare. The social model of disability focuses on structural change located far beyond individual needs – and yet meeting those profound needs is also fundamental to the rights of people with a disability. If I am disabled by my environment, then changing that environment will alter my experience of disability – but that change will not alter my impairment, nor make the need for personal support vanish.

The new scheme is built on a universal assessment framework: people with a disability, no matter the specific diagnosis or how the disability was acquired, will be assessed according to their capacity to function. It is a significant shift from past practice, in which most disability support was funded for specific diagnoses or on the basis of how impairments were acquired. Under the new model, the focus is on what the person can and can’t do.

DisabilityCare locates the provision of supports around the person with the disability and, significantly, what the person needs as an individual. Once a plan has been approved, the person can go out into the world and, with a few caveats, source supports from anywhere that they like. There are, however, strict rules around the kinds of supports that fall under the scheme. For instance, DisabilityCare will not cover anything that should be provided for under existing legislation, such as the Disability Discrimination Act. Access to buildings, transport or schools will not be covered, nor will DisabilityCare fund resources to address community attitudes towards people with disabilities. Items must also be considered ‘reasonable and necessary’.

For employment, the scheme will cover ‘supports related to daily living that a person would require irrespective of whether they are working or looking for work (including personal care and support and transport to and from work)’ but not ‘work-specific support related to recruitment processes, work arrangements or the working environment, including workplace modifications, work-specific aids and equipment, transport within work activities and work-specific support required in order to comply with laws dealing with discrimination on the basis of disability.’

Similar restrictions apply for healthcare. A person with, say, a mental illness will be funded for social and community engagement, but services of a clinical nature are to be provided by existing programs. While DisabilityCare will fund modifications in private dwellings, improvements to public housing would remain the responsibility of the relevant state or territory department.

In education, specific individual assistance is eligible for funding, but not building modifications or transport between education-related activities, where again the person must rely on the legal obligations of other governments to make sure facilities are accessible.

These examples illustrate the core conceptual problem with the new scheme: despite decades of evidence that existing legislation or requirements had done little to change the structural barriers for people with disabilities, DisabilityCare explicitly does not seek to play any role in broader change. As I said earlier, individual impairments are real, and so the need for support is also real. But the structural disadvantages implicit in a society designed for an able body remain untouched by the support funded by an individual’s plan.

DisabilityCare also signals a profound shift in the economics of social services. With public funding now flowing directly to individuals, the new scheme not only opens up a range of potential models for support provision, it also radically alters how such support is to be provided. DisabilityCare is a voucher system, with the exact allocation per person dependent on their assessed need. Once a person’s plan is approved, the individual receives public money and can – in line with the rules discussed above – source supports from any service provider or contractor. If, for example, I had a DisabilityCare plan that provided funding for transport, I could use the local taxi service rather than community transport, or I could directly hire someone to drive me around. If I needed help around the house, I could use the funding to engage a local commercial cleaner or mowing service rather than use a local neighbourhood centre or disability service.

For now, the maximum price that can be charged has been set for both equipment and services, but the plan is for these caps to remain in place only during the launch period. Bruce Bonyhady, the inaugural chair of scheme, made this very clear at the recent DisabilityCare conference:

[W]hile initially DisabilityCare has set the prices of services, in the medium term prices will be set by the market and so DisabilityCare will need to take an active interest in ensuring that markets are competitive, so that the viability of the scheme is not undermined by price inflation.

The market-driven strategy was suggested back in 2006 by those notorious bleeding hearts, the Institute for Public Affairs. According to an IPA report:

Consumers of disability and mental health services should be funded through a voucher arrangement. State and federal governments should accelerate the introduction and spread of individualised funding arrangements across a range of services and programs for people with disabilities and mental illnesses and their families.

Here the intersection between the wants and needs of individuals – individuals who are frustrated and angry at the current system – and the rhetoric of consumerism becomes apparent.

The deregulation of the disability support system is being sold as a continuation of the activist drive for people to have more control and choice over the services they use. The narratives of the reform campaign, Every Australian Counts, have stressed this over and over. No more settling for the meagre offerings that don’t fit the individual person’s needs. No more structuring lives around worker rosters or inflexible regulations.

Take, for instance, the story provided by Claire, who described her frustration over the inadequate support she had to manage in the impact of muscular dystrophy.

The system is not written for people with MD. You may get five people with MD, but we’ve all got slightly different needs depending on where our condition is. The individuals are not catered for. The system is too inflexible. I’ve been told, you’re not really disabled enough. What does that mean? Not disabled enough! I have a degenerative condition; I’m not about to get up any time and start dancing. I need this help at home so we can live the best quality of life that we can. It’s just basic everyday stuff.

Her message was that all Australians deserve an ordinary life of independence and dignity.

But it is here that the incongruity between the Every Australian Counts campaign and what DisabilityCare will actually deliver becomes clearer. The idea that people with disabilities have equal rights to able-bodied people comes from the social model of disability. But structuring DisabilityCare as a voucher-driven market for consumers ignores that model. Creating a unique system of support for people with disabilities that does not apply to able-bodied people is not a move towards a more accessible world. The ‘rights’ defended are those of individualised consumers within a deregulated market, with no expectations of structural change.

In any case, as history has shown, the market is hardly a level playing field, nor does it deliver fair outcomes.

The widespread dissatisfaction with the old funding system, particularly around the lack of personal choice or control, is undeniable. According to Shut Out, a 2009 report by the National People with Disabilities and Carer Council, Australians with a disability were experiencing systemic disadvantage not just within society but also within the disability support system itself.

More than half of the submissions received during the consultation process (56 per cent) said aspects of disability services and programs acted as a barrier to, rather than a facilitator of, their participation. The disability service system was characterised as irretrievably broken and broke, chronically under-funded and under-resourced, crisis driven, struggling against a vast tide of unmet need. As a result many felt more time was spent rationing services than delivering them.

Two years later, the Productivity Commission was explicit about the need to develop a market in disability services so that consumers would have more choice:

In most consumer contexts, absence of genuine choice tends to result in lower quality and more costly services, less product variety and less innovation. In contrast, consumer control of budgets through self-directed funding, or even the option of controlling budgets, creates incentives for suppliers to satisfy the needs of consumers, given that they would otherwise lose their business. That in turn typically leads to more complex markets, with suppliers developing differentiated products for different niches, promoting their products and advertising their prices and other relevant characteristics.

But was the lack of choice in disability services a function of a historical lack of funding? And is this current language of choice moving away from a notion of universal rights, offering in its place merely a right to consume?

The attribution of problems in the old disability support system solely to its relationship to government – without looking at how services were delivered or whether they met the real need in the community – comes straight from the neoliberal playbook. For neoliberals, everything that the state – or, in the case of disability services, the outsourced not-for-profit sector – does is innately inefficient because it is not subject to the discipline of the market. Thus we find the IPA arguing in 2012 that public sector wages are too high as workers do not face the pressures of the free market and the sector is dominated by unions.

But is the ideology of a market infinitely responsive to consumer demand true? A 2013 report from the UK-based New Economics Foundation looked at a range of examples where previously public services had been privatised or outsourced, and showed that, across the transport, prison and healthcare sectors, public delivery of services was more cost-efficient than those that had been privatised. In the US, a trend towards ‘insourcing’ has begun, where work that was contracted out has been brought back into government control, leading to significant cost savings. For example, medical care in Ohio prisons now costs millions less because health workers are now employed directly by government, instead of being outsourced. The doctors working with prisoners are able to reduce the number (and therefore cost) of prescription services by providing a continuity of care that is not profitable enough for private sector providers.

Care work in general has traditionally been grossly undervalued by the market, with disability workers among the lowest paid employees and with the worse conditions. Furthermore, care work is mostly done by women, who are also subject to the gendered wage gap. As a recent report by the National Centre for Social and Economic Modelling notes, ‘Occupational segregation is important to include in analyses of gender wage gaps, as it can often be an indicator of the undervaluing of women’s work. That is, traditionally “female” jobs tend to be less well paid than traditionally “male” jobs.’

So what will happen to workers employed under the new scheme? Will the focus on flexibility and choice come at the expense of their right to secure work? International experience has shown that poorly-regulated individualised systems lead to a significant drop in wages and conditions, which in turn flows on to the quality of services available for people with disabilities. In the UK, where a privatised system for disability support has been active for some time, care workers report significant problems with wages and lack of security, which has consequences for the clients they assist. Workers describe their distress at not having time to properly do their jobs and at only being paid for the work in clients’ homes (rather than travel between homes or for training).

The 2010 Who Cares, Who Pays report, prepared for UNISON, the UK’s largest public service union, pointed to the lack of regulation for employees as leading to poor outcomes for people with disabilities, as well as for the care workers. ‘So far the labour market in social care has not worked well,’ the study concluded. ‘Constrained by government funding and care recipients’ own income, wages in the social care sector are among the lowest in the country with little career structure for staff. There are high turnover rates and continual vacancies.’

Similar concerns were raised by a recent UNSW study:

[E]vidence indicates that individualised funding schemes create a number of risks and uncertainties for workers. For those who are employed by organisations, there is evidence that organisations have passed many of the risks associated with increased flexibility onto workers, responding, for example, to increases in short notice requests with a casualised, on-call workforce, for whom there appear few offsetting benefits.

An analysis of DisabilityCare suggests that the British experience may well be replicated here.

DisabilityCare will have two tiers of service providers. In one tier will be registered organisations, which will undergo a level of scrutiny and will have to abide by certain criteria, including possessing experience in delivering services. The other tier only need to have an ABN and a bank account. If I have my plan managed by the DisabilityCare Agency, then I will have to use a registered organisation for the services I need. But if I manage my plan myself, then I can use anyone. The DisabilityCare rules are clear on this point: ‘Unless a participant’s plan is managed by the Agency, there is no restriction on who may provide supports under the plan.’

This is a big shift within the disability support sector, with existing organisations joined by a host of new entrants, who may be more inclined to adopt a contracting model for staff, rather than employ permanent workers.

A 2013 RMIT project, Making It Work, looked at some of the potential implications of this design on workers. They identified several key points of concern. Will an individual’s funding allocation be sufficient to cover time for workers to plan and get support or training? If not, then are workers expected to cover the costs themselves? Will the plans actually fund the full amount of support that people with disabilities need? And if not, then who will be filling in the gaps? The project also identified a key tension between the need for people with disabilities to have the flexible support they need and the impact of insecurity and changing rosters on workers.

The move towards more contracting and less secure work could undermine the overall effectiveness of DisabilityCare, driving down wages and skills in a sector that is hardly well-paid now. Rod Cooke, from the Community Services and Health Industry Skills Council, says that ‘to attract the workers we will need national and local recruiting initiatives, improved salary and a focus on retention to keep good workers.’ The council estimates that the workforce will need to double over the next five years to meet the expected demand. But dealing fairly with those who will deliver services is not something that a market-driven system is designed to do. How will this aspect of a neoliberal system impact on the quality of the services that DisabilityCare will fund?

Addressing individual impairment is certainly important. But a focus only on this aspect of disability support leaves social change to the individual, while the broader society remains unaltered. If people with disabilities are really equal citizens, then why should their support services be delivered differently to everyone else’s? Or is this just the beginning of a wider unravelling of the social contract between citizens and government that will flow across to other services, until we are all just individuals with our individualised funding packages competing in the marketplace?

A decade ago, my cracked feet left bloody marks on the kitchen floor. This would always make me cry, thinking of mermaids and the like. Now, that glass I am walking on is inside, wrapped around the tiny bones of my feet. The shards have melted. My bones burn.

I have a disgraceful longing sometimes. I want that shiny packaged life that I see on the screen. Just for a second, I want that perfect skin and those graceful bones. I want that lover and those children. I want that ordinary consumption. Because my ordinary has been so different.

My ordinary was months in hospital, over and over. My ordinary was horrible drugs that made me sicker. My ordinary was letting drug companies film my most private moments – because, of course, I might not get that experimental drug if I don’t. My ordinary was going on television in a desperate attempt to convince people to take psoriasis, and other immune-related diseases, seriously. My ordinary was always having to say that I can’t do that. I want your ordinary. I want that ordinary – because it is the only ordinary being offered.

The ordinary choice that any consumer gets is key to how DisabilityCare is being sold. But it is still a located within your ordinary, not mine. Your ordinary still has stairs to the train station, and it still stares at difference. How much of my individual choice can change this?

El Gibbs

El Gibbs is a freelance writer with an unhealthy interest in Senate committees. She has written for New Matilda, Crikey and Overland; she’s on Twitter at @bluntshovels and blogs at www.bluntshovels.wordpress.com.

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

If you like this piece, or support Overland’s work in general, please subscribe or donate.

Related articles & Essays