Introduction
Internationally, the past two decades have been marked by significant reframing and redefining of the nature, provision and financing of government services. From a dominant model of state-delivered services through bureaucratic models, there has been a shift towards outsourcing, competitive markets and community-based delivery. From the provision of a universal, one-size-fits-all service through distinct silos, governments have sought to construct whole-of-government, person-centred service delivery. The rise of such ‘individualised’, or ‘personalised’, services sits within a discordant and contested constellation of political, economic and social ideas and agendas. These include individual choice and markets; service user rights and advocacy movements often sitting within social democratic ideals; and community-based solutions as a counter to rigid, depersonalised bureaucracies.
Health and social care services is one area in which the theme of personalisation has become a dominant frame for policy deliberations and reforms in many OECD countries and it takes a variety of forms. Personalisation of social care for people with disabilities, for example, can include: capacity for ‘choice’ of service providers; ‘direct payments’, whereby individuals are directly paid the cost of the services they need which they then purchase (perhaps with the support of professionals); pooled funding, in which the funding for the various types of care and support needs are pooled to form an overall ‘individual budget’ within which services users have some scope to decide what services and providers they utilise; and ‘co-produced services’ or ‘self-directed services’, where service users (and service providers or brokers jointly) determine a package of care and support that best meets their needs and preferences. In short, personalisation involves reframing financing, governance and service delivery.
Considerable progress toward personalisation practice within adult social care has been particularly developed in England, with the introduction of Direct Payments under the Community Care (Direct Payments) Act 1996 (Glasby et al., Reference Glasby, Grand and Duffy2009) and in 2005 with Individual Budgets to enhance person-centred planning and choice for service users (Jones and Nettan, Reference Jones and Nettan2010). While generally personalisation initiatives have been positively perceived (Glendinning et al., Reference Glendinning, Halliwell, Jacobs, Rummery and Tyler2000), their operation has posed unique challenges for front-line workers and traditional models of care (Foster et al., Reference Foster, Harris, Jackson, Morgan and Glendinning2006; Needham, Reference Needham2010; Sowerby, Reference Sowerby2010). Moreover, social services organisations have acted as gatekeepers limiting the extent of its operation (Blyth and Gardner, Reference Blyth and Gardner2007; Glasby et al., Reference Glasby, Grand and Duffy2009). More recently, personalisation policy encourages English social service departments to engage more proactively and collaboratively in delivery system change and to show progress in personalisation practice. Aligned with this, ‘self-directed support’ removes the discretionary element by obliging organisations to inform service users as soon as possible about the amount of funding directly available to them to meet their needs (Duffy et al., Reference Duffy, Waters and Glasby2010). The key elements of self-directed support include user control over a personal budget and support to plan care, and state responsibility for ensuring the quality and care of people in receipt of self-directed support (Duffy, Reference Duffy2010). Significantly, although linked to the personalisation agenda, the idea behind self-directed support is more about positive citizenship in that it aims to promote, rather than erode, equality of participation and control, both of which are key elements of citizenship (Duffy, Reference Duffy2010).
However, in so far as the concept of personalisation promotes choice and control for service users, it also contains many meanings and ambiguities. These relate specifically to the nature of the relationship between public services and citizens, the responsibilities and expectations of both disabled citizens and front-line workers and the notion of citizenship more broadly. On the one hand, it is suggested that by the state creating the conditions within which individuals are enabled to take more control over their lives and how public resources are used, there is opportunity for citizens to drive innovation and competition within the social care market (Leadbeater, Reference Leadbeater2004). On the other hand, it is argued that the ideals of empowerment and control have been seized by government and used as justification to shift more responsibility and risk management back onto individuals, while at the same time expecting individuals to act responsibly (Ferguson, Reference Ferguson2007; Scourfield, Reference Scourfield2007). Such conditions are likely to have differential impacts on different groups of people and to favour those with more personal, social and economic resources. For front-line practitioners, there are ongoing uncertainties about what is deemed a legitimate use of public funding and, as a consequence, dilemmas arise in regard to determining the level of need and working within organisational and resource constraints (Needham, Reference Needham2010).
Although Australia has to date opted primarily for individualised packages of care provided and funded through key service providers (Chenoweth and Clements, Reference Chenoweth and Clements2009; IPA, 2006), there is an increasing interest in personalised care and support as part of enhancing choice and control for disabled people. In 2010, following coordinated campaigning by a collective of disability and care organisations and high-profile individuals, the Australian Government undertook to develop a National Disability Strategy and instituted an inquiry into the feasibility of a National Disability Long-term Care and Support Scheme (LTCSS) for people who acquire a disability before the age of sixty-five years. This commitment was made in the context of increasing demand on specialist disability services (AIHW, 2009a), alongside growing levels of unmet need, an over-reliance on informal care (Senate Standing Committee on Community Affairs, 2007) and increasingly complex and diverse needs, with many people experiencing multiple disabilities (AIHW, 2009b). In 2007–08, the largest proportion of users of specialist disability services was people aged twenty-five to sixty-four years with intellectual, physical or psychiatric disability as their primary disability (AIHW, 2009a). The growing level of unmet need has reinforced a strong rationing culture, with potentially negative consequences for equity and access for individuals and informal carers. Indeed, the Australian government's independent inquiry summarised Australia's disability care and support system as ‘underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports’ (Productivity Commission, 2011: 2).
Two core ideas frame debates about disability reform in Australia and recur in the discourse surrounding the LTCSS: entitlement and personalisation. In the main, there has been a strong emphasis on a system of entitlement, which would provide a minimum standard of services based on need, as indicated by this statement by the Australian Government Department of Families, Housing and Community Services and Indigenous Affairs (FaHCSIA).
While Australia's social security and universal health care systems provide an entitlement to services based on need, there is currently no equivalent entitlement to disability care and support services. (FaHCSIA, 2010)
Equally it is proposed that, whilst entitlement to services should be based on needs, the goal should be provision of ‘customised’ or personalised care and support for people with disability that takes account of ‘desired outcomes’. The statement below by Bill Shorten, the Parliamentary Secretary for Disabilities and Children's Services promotes the personalisation approach.
Instead of funding services for people with disability to find . . . this proposed new approach would provide individualised lifetime care and support for each person from the point of diagnosis. Individual case managers would work with individuals and their families and carers, developing customised plans for treatment, care and support, aids and equipment, transport, home modifications and so on. (Shorten, Reference Shorten2009)
The dual policy principles of entitlement and personalisation are embedded in the Independent Inquiry's Draft Report of February 2011, with its recommendation for the assessment of an ‘individualised support package’ that ‘concentrate on the reasonable and necessary supports people require’ (Productivity Commission, 2011: 19).
Both entitlement based on need and personalisation are persuasive policy principles. On the surface, these concepts are also a sharp contrast to the expectation that individuals must endeavour to meet certain bureaucratically agreed diagnostic, age and income eligibility criteria and generally ‘fit the system’. Yet it becomes far more problematic when considering what these principles might mean in practice. The concept of ‘entitlement based on need’ is not unambiguous, nor does it guarantee access since entitlement does not automatically equate to a right to receive. Concurrently realising both entitlement based on need and personalisation based on individual preferences is difficult conceptually and in practice, given the former implies some eligibility restrictions while the latter is seemingly unbounded and diverse. What is missing in the policy discourse is some indication of how inherent tensions would be resolved and how desired outcomes will be ascertained and choice implemented in practice contexts. Significant to the outcome will be how social policy conceives the role of public and private sectors in the financing and provision of care and support and, concomitant with this, the rights and responsibilities of the individual.
In this article, we: (1) examine the various conceptions and ambiguities concerning the principles of entitlement based on need and personalisation incorporating desired outcomes; and (2) consider the implications for individual rights and responsibilities and public and private arrangements for financing and provision of care and support. The purpose of the article is to use a conceptual discussion to develop a critical perspective on the ambiguities and challenges of operationalising policy principles in practice. To emphasise and demonstrate the conceptual and practical tensions, the article incorporates some examples from a three-year research project being undertaken by the authors on the financing and management of lifetime care and support for adults, aged eighteen to sixty-five years, with acquired disabilities. As part of this project, individual case studies are being conducted in the Australian state of Queensland to elicit individuals’ perspectives on the care they receive, the financing and management arrangements and the adequacy of their care. The case studies involve in-depth interviews with individuals, their families and care providers. The article commences with a brief overview of the proposed LTCSS. The discussion then focuses on the central principles framing the LTCSS and the implications for the establishment of a LTCSS in Australia, first looking at entitlement and personalisation, and then the operation of this within a market framework of choice.
Proposal for a national disability long-term care and support scheme
A Productivity Commission Inquiry was established in 2010 to examine the feasibility of a LTCSS and a draft report and recommendations was handed down in February 2011 (Productivity Commission, 2011). The inquiry considered and assessed the options for a scheme that has capacity to provide life-long ‘essential’ care and support services as an ‘entitlement’ for all people who are born with, or acquire a severe or profound disability before the age of sixty-five years, whilst also aiming for personalised service arrangements. Essential services would encompass an individualised and coordinated package of care, covering accommodation, aids and equipment, respite, transport and a range of community participation, employment and day programs to enable desired outcomes across the lifetime. Further, the recommended draft scheme would have capacity to calculate and manage the costs of long-term care and support which is both personalised and planned according to the desired outcomes of the individual over his or her lifetime. Notably, the Inquiry recommended the introduction of a no-fault social insurance model as a mechanism for financing a LTCSSFootnote 1 which would fit alongside the current state-based compensation schemes for motor vehicle and workplace injury.
The overall goal, espoused by both government and policy reform advocates, is to replace an ‘outdated welfare’ model with a scheme with the capacity to proactively manage costs and plan services to address the needs and desires of people with disability over their lifetime (Bonyhady and Sykes, Reference Bonyhady and Sykes2008; FaHSCIA, 2010). Different policy participants in this reform process have prioritised different principles and support different approaches to determining eligibility and the allocation of resources. The private sector Disability Investment Group (DIG, 2009), for example, argues that an insurance approach funded through general revenue will ‘treat people equally on the basis of need’. However, there is also a strong push for government to support a publicly subsidised private system to ‘enable people with disabilities and their families to be in control, make choices and plan their lives with confidence’ (DIG, 2009). Similarly, some disability service providers also endorse the social insurance approach and system of entitlement but advocate a more targeted rather than universal approach based on level of need (NDIS, 2009). A contrasting perspective is that of the Social Enterprise Partnership (SEP), a group representing a national movement of people aiming to reform the system. This group is critical of an insurance model as they perceive that decisions about entitlement are more likely to emphasise risk management and cost containment rather than personalisation and control. Entitlement, according to this group, would also comprise discrete payments covering specific financial benefits and supports, made to the nominated agent of each individual.
Two issues remain contentious and unaddressed: first, what ‘entitlement to services based on need’ and consequently essential services are likely to constitute; and, second, given the simultaneous emphasis on a system of entitlement and personalised care that accounts for ‘desired outcomes’, the extent to which the proposed reforms will promote marketisation of disability services and perpetuate current inequities. The discussion of these issues is developed with reference to three individual storiesFootnote 2 from the research currently being conducted by the authors (see Box 1).
Box 1. Case Studies
Case 1: AnnieFootnote 2
Annie is forty eight, single, and lives in a rented public housing unit with one of her adult children. Five years previously, Annie sustained a spinal cord injury. Her income includes a part Australian government social security pension provided and regular monthly payments from her superannuation. Under a special State Government funded spinal injuries initiative, Annie receives an individualised care package which includes personal care services paid to and coordinated through a not-for-profit, member-based non-government organisation. Personal carers come to her home three times a day for a total of eight and a half hours a day to assist with transfers, dressing and domestic tasks. Medical Aids Subsidy Scheme subsidise the cost of aids and equipment and a Social Housing program subsidises modified housing. Annie pays personally for additional care and support and the out-of-pocket costs for a power wheelchair and a special bed. Her specialist medical care is privately provided and subsidised by the Federal Government. For a short time she accessed a publicly funded psychologist and, although she would like more counselling, she cannot afford a private service. Annie would like to find employment but does not receive any assistance for this.
Case 2: Dominic
Dominic is fifty-four and has a diagnosis of motor neurone disease. He lives alone in his own home. Dominic uses an aid for walking in the home and a wheelchair for outside the home. He sees a medical practitioner regularly, subsidised by the Federal Government. Following advocacy by his local doctor, he was able to access personal care three mornings a week for approximately 45 minutes each visit. This is delivered by a not-for-profit organisation and funded by the State government but Dominic pays a $7 co-payment for each episode. He is heavily supported at other times by family and friends. Dominic regards his current care arrangements as adequate, but not conducive to his idea of independence. His income is from private disability insurance, which he voluntarily instigated some decades earlier. He describes the insurance payment as slightly above an average weekly wage, and is thus ineligible for a government disability pension. Ideally, Dominic would like a live-in carer to improve his quality of life, but found it costly and difficult to locate a suitable person. His disability insurance extends for a further three years only and, in preparation, Dominic has re-mortgaged his home to ensure his financial resources are adequate to cover the costs of his care.
Case 3: Marion
Marion is in her mid forties and has a diagnosis of Multiple Sclerosis. She lives in supported accommodation in the community during the week and spends weekends with her family. The purpose-built, apartment-style accommodation designed specifically for young adults with disability is the product of a partnership between a charity, business and government. Marion's personal and domestic care received at the facility is fully funded by the State Government. Marion has access to limited physiotherapy and occupational therapy at no cost at the facility. Marion pays privately for massage, podiatry and hydrotherapy outside the facility, which is subsided by her private health insurance. Marion has access to a car owned by the facility for personal activities, otherwise she uses public transport. Her income includes regular payments from private income protection insurance and her own savings, but no government pension.
Ambiguities of needs-based entitlement and personalised care
The concept of ‘need’ has remained a central distributional principle in social policy (Dean, Reference Dean2010). Moreover, ‘entitlement to services based on need’ is analogous with a notion of welfare whereby the state assumes responsibility for ensuring certain socially defined basic needs of citizens are met to enable higher order goals such as health, well-being, and social and economic participation. Yet what precisely constitutes ‘need’ and what, if anything, is a universal need whereby everyone should be guaranteed a minimum level of assistance are ambiguous and contested. Gough and Thomas (Reference Gough and Thomas1994) describe three types of ‘need’: basic, relative and universal. A basic need is understood to be linked to our biological make-up and human activity, for example the need to sleep; whereas a need is relative when it is a means to achieving particular ends or goals, for example an individual's need for transport to travel to work can be satisfied in a variety of ways. A universal need is generally considered something in the best interests of everyone because serious harm is likely to result in the absence of need satisfaction (for example schooling and health care). When a need is considered universal, there usually is a corresponding expectation of guaranteed government provision of relevant benefits or services equally to all citizens. Although not everyone concedes the existence of universal needs (see Gough and Thomas, Reference Gough and Thomas1994), it is arguable there are some needs that apply to everyone and for which satisfaction is crucial in realising broader social goals, such as social and economic participation and a functioning economy. Indeed, health care is often considered as a prerequisite for achieving individual and collective health and well-being, and a productive and sustainable society, and is thus universally financed and provided.
The proposal for a LTCSS incorporates references to universality, with the suggestion that there should be an equivalent universal entitlement to essential services, as exists for health care. There are a number of issues to consider, however. First, this implies that social policy will in some way define or determine the benchmark for essential services. Yet, it is difficult to see how this can be resolved without discussion about the parameters of the scheme and, even more so, what overall outcome is being addressed and what combination of services are required, in which contexts, to bring this about. Related to this, what counts as legitimate services under a publicly funded scheme and what concurrent restrictions are imposed is uncertain. For example, the benchmark for essential services is likely to differ considerably depending on whether the goal is to support people to live independently in the community, with their preferred options of care and support, or whether the goal is to support people to realise a broader conception of social inclusion. These points are highlighted in the individual case examples 1 and 2 (see Box 1). Taking the latter approach, Annie's desire to realise employment would mean entitlement to assistance through a federally funded employment program, not simply entitlement to essential personal care that allows her to live independently in the community. On the other hand, Dominic's goal is to have his needs met in his own home and he is willing to reorganise his personal finances to achieve this goal. Whether Dominic's desire to remain living at home, and the associated care that this requires, will be interpreted as personalisation under a publicly funded entitlement system is not clear. To address entitlement, it is reasonable to assume that there will likely be some process of clarifying need and the outcomes to be achieved. However, for personalisation to co-exist, the means by which those needs are to be met must allow for more individual choice and control (Duffy et al., Reference Duffy, Waters and Glasby2010). In the Australian context, this would require quite significant structural reform to develop the conditions for choice and the appropriately tailored support so that choices can be made.
Annie and Dominic's situations also bring sharply into focus both the uncertainty of need and questions about the ethics of care by highlighting vastly different needs depending on whether a person experiences a sudden onset disability, such as acquired spinal cord injury (SCI), or a progressive condition such as Motor Neurone Disease (MND). Although Annie's personal care and support needs are likely to be somewhat predictable over her lifetime, given the nature of the spinal cord injury, the more contentious issue concerns the role of rehabilitation and therapy over the lifetime and who pays for this. Evidence on the substantial health and quality-of-life benefits gained from physical activity suggests rehabilitation should be part of essential services for people with spinal cord injury (Martin Ginis et al., Reference Martin Ginis, Jetha, Mack and Hetz2010). Despite Annie's lack of ongoing access to psychological services, there is also evidence to suggest that such intervention is important in facilitating positive behaviour and recovery (Kortte et al., Reference Kortte, Gilbert, Gorman and Wegener2010). By contrast, in Dominic's situation, there is a marked degree of uncertainty regarding his care needs over his lifetime, as is consistent with the degenerative nature of Motor Neurone Disease. This not only complicates the understanding of essential services, but also raises important questions about how to build capacity within service systems to ensure personalisation is achievable across different disability trajectories (Ungerson, Reference Ungerson2000).
A second issue that warrants consideration is the practical implication of combining universal entitlement based on need and personalised services within a social insurance approach. An actuarial model is likely to be applied to calculate the risks and costs of disability and lifetime care, and to set the insurance premium. However, at the individual level, needs-based entitlement that also delivers personalised care will potentially generate some challenges for decisions about resource allocation and cost containment. This is in part because of the complexity of translating actuarial-based assessments into entitlement at the individual level, particularly when uncertainty and subjectively of assessment often impact (Kemshall, Reference Kemshall2010). The Australian Government advocates a ‘case managed’ approach, and there have been strong arguments from many policy participants for the appointment of ‘consumer intermediaries’, essentially appointed agents to enable people with disability to actively plan and control their care and support arrangements (Hughes, Reference Hughes2006; SEP, 2010). Yet, service providers often display immense variability in their decision-making about the allocation of assistance and their willingness to advocate for service users and for enhanced service responsiveness (Foster et al., Reference Foster, Harris, Jackson, Morgan and Glendinning2006). The ambiguity of the personalisation concept potentially increases uncertainty and diversity among front-line practitioners given the breadth of ideological and value interpretations it engenders (Needham, Reference Needham2010). This could mean either taking the idea of user choice and control to its fullest, allowing the individual to determine the means by which his or her needs will be met, or, conversely, using a more circumscribed process whereby the individual user is provided with a range of options to choose from to meet their needs.
Equity of access under a system of needs-based entitlement is a third consideration. Treating equally on the basis of need implies equal satisfaction of need, which requires equal access (Wetherly, Reference Wetherly1996). Entitlement to services may be determined in accordance with legislation and on condition the individual meets the conditions of citizenship. All Australian citizens, for example, are entitled to access public hospital services free of cost under Medicare and there are entitlements to social security benefits in the event of unemployment. Yet the notion of ‘entitlement based on need’, while seemingly bestowing a right, does not automatically equate to access. For example, in Australia while the right to health care is based on an agreed minimum standard of need satisfaction, that is basic hospital and medical services, the right to access is often impacted by availability and geography (AIHW, 2008), lengthy waiting times in the public hospital sector and out-of-pocket costs for medical services (Duckett, Reference Duckett2007). By contrast, entitlement to social security benefits is assured if an individual meets eligibility criteria and other compliance conditions, and this right is protected by administrative appeals processes. A critical question, therefore, concerns the mechanisms and resources required to ensure the principle of universality of entitlement actually equates to equal treatment on the basis of need and equal access.
In an insurance model, the insurer can dictate what needs are entitlements and also regulate service availability through funding relationships with service providers. In Australia, there are also complicating factors such as geography and service capacity within different jurisdictions, which limit availability and accessibility and are not easily overcome without significant investment in infrastructure and workforce planning. Hence, although choice might be advocated as part of personalising care, there is a real danger due to such constraints that the opportunity for choice is grossly exaggerated for some populations (Greener, Reference Greener2008). Moreover, it cannot be assumed that all people will have the same degree and capability for choice. The examples of Annie and Dominic suggest that some people will have access to more social and economic resources, including compensation, household income or private insurance which will enhance their opportunities for choice. Private funding, for example, can allow people to supplement their publicly funded provision (Glendinning et al., Reference Glendinning, Hudson and Means2005) or, alternatively, to ‘opt out’ of the public system. In terms of the LTCSS, these are potentially contentious issues with implications for equity of access and relate specifically to the social objective of the proposed scheme and how public–private relationships are likely to operate.
Personalisation and marketisation
The principle of personalisation supports person-centred planning and decision-making such that the individual's choice and control are paramount (Fisher et al., Reference Fisher, Gleeson, Edwards, Purcal, Sitek, Dinning, Laragy, D'Aegher and Thompson2010). It also supports the idea of ensuring planning meets ‘desired outcomes’, which is indicative of the conception of needs as wants or subjective preferences (Dean, Reference Dean2010). This is significant in terms of financing and delivery of a LTCSS. Whereas the satisfaction of needs is often thought to require state intervention, the satisfaction of wants is often argued to be the domain of the market (Wetherly, Reference Wetherly1996). For example, the satisfaction of need for basic hospital and medical services is met by government, but this does not inhibit the individual from also expressing their personal preferences, for example for a particular provider or hospital, by purchasing private health insurance, or paying personally for his or her desired service. Notably, government policies in the area of health have increasingly encouraged Australian citizens to be more active in meeting their health care needs by purchasing health insurance and exercising responsible lifestyle choices (Duckett, Reference Duckett2007). The example of health care highlights the obscure boundaries between public–private financing and provision that also exist, and are likely to be more pronounced for disability care and support under the proposed LTCSS. Moreover, in the context of a LTCSS, these issues serve to highlight the ambiguities surrounding personalisation as it relates to citizenship, in particular the extent to which this concept is applied to create the appropriate structural conditions within which disabled citizens can exercise more choice and control so that they are empowered to fully participate in society, or used to justify shifting more responsibility for meeting needs on to individuals and families.
A strictly consumer-orientated market approach posits that individuals should be allowed substantial freedom of choice to satisfy their needs, while inequities generated by the market should ideally be addressed through provision of a universal ‘safety net’ to meet unmet needs (Dean, Reference Dean2010). A targeted safety net approach to welfare services based on those most in need (or most at risk), along with incentives to encourage individuals to take greater responsibility in managing their wellbeing to reduce the burden on the state, has become an increasingly common feature of social policy internationally over the past three decades. This has occurred in the context of a growing use of services provided by the private and not-for-profit sectors. This shift has also endorsed and prioritised market-based provision as a mechanism through which individuals can better satisfy but also manage their needs. The DIG report (2009) advocates the provision of appropriate incentives to stimulate private investment in the disability sector and to encourage family members to save for the short-to-medium-term financial needs of a family member with disability. Implicit in this are the many guises of personalisation, including the empowered but also ‘active citizen’ taking more responsibility for meeting their own needs. Dominic's (see Box 1) decision to take out insurance early in life is illustrative of the ‘active citizen’ and yet, despite this, he identifies significant unmet needs within public provision.
A significant risk within social care markets heavily reliant on a blend of public and private financing and provision to meet individual need is that this can create inequities in choice but also blur the lines between individual and collective responsibility (Sapey and Pearson, Reference Sapey and Pearson2004). This is illustrated in Annie's situation (see Box 1) regarding access to psychology services. While Annie expressed her need to continue to receive psychology services, from the public sector perspective this was seen to be no longer a legitimate need. However, if market conditions are in place, in terms of availability of a range of options, and there is capacity to extend choice, by paying personally for more psychology services, then Annie could express her personal preferences through a broader social care market, rather than the traditional service system. By doing so, she would likely achieve some advantage over those who are either unable to finance services privately, or who are limited by the structural context, that is a lack of options. Marion's example (see Box 1) highlights this point. In Marion's case, she is in receipt of publicly funded services to address her need for supported accommodation, personal care and basic therapy services. However, Marion has expressed her desire for additional therapy (massage and hydrotherapy) by going outside of the publicly provided system to pay personally for these services. It is not that Marion should not be afforded choice, rather it is a matter of how social policy should function to ensure both opportunity and equal levels of choice for both women.
In the case of Australia's LTCSS, there are several attributes of choice which require attention if the publicly funded social care market is to function equitably for all disabled people. These include: a clear framework, which provides a basis upon which choices within the care market can be made; the appropriate structural conditions, which provide equity of choice regardless of personal and geographical context; and availability of good information for users to assess different choice options (Greener, Reference Greener2008).
Conclusion
The uncertainties surrounding the proposed LTCSS scheme reflect the conceptual tensions and ambiguities surrounding rights and responsibilities of individuals, families and the state, and the public/private arrangements for the financing and provision of care and support. Indeed, Yeatman (Reference Yeatman, Yeatman, Dowsett, Fine and Gursansky2009) argues that contemporary debates about welfare are not about resource allocation but reflect a much deeper ideological concern about the conception of the individual and how welfare services should be organised. This involves the extent to which social policy should endorse the idea of the ‘individual will’, whereby individuals are provided as much freedom as possible to exercise choice in meeting their own needs, and the role of the state is essentially a minimalist one. On the other hand, there is the notion of the ‘individual as self’ (Yeatman, Reference Yeatman, Yeatman, Dowsett, Fine and Gursansky2009). In this case, the state has a much more expansive role in providing for the welfare of individuals, and the function of social policy is to support the realisation of potential and participation of all individuals across the life course. Hence, policy makers face very challenging questions pertaining to both the entitlements and responsibilities of individuals and families, and the role and responsibilities of government in the financing and provision of lifetime care and support.
Given international policy directions, including Australia's proposed LTCSS, which aim to redefine the nature, provision and financing of care to more strongly reflect personalisation, it is important to critically reflect on the social objectives that sit behind these ideas, and the practicalities of implementing them, including how public and private sectors interface. In Australia's case, recognition of the complexity of the policy domain, which involves provision of services across the lifetime and across multiple areas, to a diversity of population groups, is also essential if the aim is to deliver not simply a system of entitlement, but an accessible and equitable system with capacity and flexibility to deliver personalised care according to individuals’ preferences. In essence, what is at stake is not simply about how a lifetime care and support scheme can function to deliver a system of needs-based entitlement. Rather, it is about how social policy should and can best support the diversity of individual lifestyles that is a feature of modern citizenship (Sevenhuijsen, Reference Sevenhuijsen2000) and avert potential negative trade-offs between entitlement, access, equity and choice that inevitably arise because of the uncertainties of need coupled with cost considerations.
