Governance and finance of long-term care - University of Birmingham

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Allen et al., 2011 Governance and Financing of LTC | European Overview cash benefits came as a new tool for refunding the LTC system, relying more on a market approach while not endangering LTC financial sustainability. In Sweden and the Netherlands, with relative ease of access to formal services, cash benefits appeared linked to a political climate favouring more market-‐ driven mechanisms. In the Nordic countries, aligned with the New Public Management ideas, cash benefits were considered as a means to fight against the ‘paternalistic and inefficient way’ of planning and delivering public services, as they would enable the opening of the market to non-‐public providers and boost more responsiveness and quality through competition (Da Roit & Le Bihan, 2010). In the Netherlands, cash benefits were also perceived as a tool to fight against the dominance of professionals in shaping older people’s choices, by giving them direct purchasing power in seeking care arrangements that would best fit their needs and expectations (Evers et al., 1994). In this regard, cash transfers were designed for people with LTC needs (attendance allowance, direct payments) to financially compensate the (informal) carer they had chosen; some countries also developed care allowances as direct cash payments to the carers. Moreover, individual budgets are meant as means for users to contract the services they need themselves. In a number of cases, the budgets are also used for paying for informal carers (NL). Both benefits were aimed at helping informal carers solve the dilemma between working and caring, by giving them (indirectly or directly) some financial compensation for their provision of care, particularly if they had to stop work or reduce working hours. One effect of this ‘commodification of care’ (Ungerson, 2003) was to blur the boundary between formal and informal carers and bring into question informal carers’ previous status i.e. as people providing care with an engagement based on gift and reciprocity; as being non-‐professionals and not trained to provide care; as performing a wide range of tasks including emotional support and assistance; and with no limits to time spent on care. In a growing number of countries, as a result of these cash benefits, it now appears that a proportion of informal carers benefit from special training and obtain financial contributions based on some form of contracting linked to social rights (OECD). What are the major impacts of these changes? Data and research are beginning to show that, as cash benefits were also conceived as cost-‐cutting devices for formal services, in most countries they were set at a level which usually did not allow beneficiaries to care and work under good conditions; also, as they came with a lower level of social rights’ coverage than that of a worker in the labour market, they increased their risk of social isolation and poverty (Fontaine et al., 2009). So it appears that funding LTC through cash mechanisms to informal carers may contradict the goal of a high level of employment for women and older people, as it more frequently acts as a ‘care-‐trap’ mechanism. Only in the northern countries where cash benefits spread to a more variable, but rather limited extent (slightly more in NL and FI), were the levels of high-‐dependency care benefits set to be comparable with professionals’ salaries and with similar social rights. It has also been suggested that the introduction of cash benefits as a driver for optimizing the balance between informal and formal care in the provision of care delivery in different countries, was strongly influenced by the historical and legal balance in the sharing of responsibilities for people with LTC needs between families, state and the market (Triantafillou et al., 2010). • In countries where families have primary financial responsibility for dependants (EL, ES, FR, IT, SK), there is also a corresponding assumption of their responsibilities for providing practical care, thus allowing the state to continue to limit its financial intervention in formal service provision. 38
Allen et al., 2011 Governance and Financing of LTC | European Overview Furthermore, in some of these countries (IT, EL), the lack of formal support services for older people has led to a high reliance on privately paid migrant care workers. This may also endanger future access to professional resources by reinforcing the trend to set formal care providers’ wages at the lowest level, thus giving them the lowest status in the professional hierarchy in the labour market. • In countries where the state has primary financial responsibility for dependants (SE, NL), this ‘formalisation of informal care’ contributed to a various extent to a refocusing on families’ responsibilities (Da Roit & Le Bihan, 2010), giving them a more important role in the care process (FI), while relieving the financial contribution of the state. The third and major issue lies in the difficulty of isolating sub-‐policies specifically designed for informal carers from overall LTC policies designed for older people. The ‘invisibility’ of informal carers’ support policies stems from the fact that at all levels, whether political, organisational or delivery, the needs and wishes of informal carers tend to be conflated with those of the person they are supporting (Arksey & Glendinning, 2007). Decision-‐makers appear to take for granted the existence of a natural harmony between these two actors, neglecting the complex and frequently conflicting dynamics of care-‐giving relationships. So when assessing the effectiveness of measures regarding informal carers, it is important to disentangle the carer’s opinion from that of the older person, acknowledging that they may not coincide. At delivery level, the provision of cash benefit is an ambivalent mechanism: empowering and giving more choice to the older person through a cash benefit may not necessarily positively impact on the caregiver’s situation, as older people’s choices may not be in line with the carer’s e.g. the choice to work instead of caring may not be accepted by the older person. If attendance allowances are used to pay informal carers, she/he can be placed in a situation of subordination with respect to the recipient, especially in cases of economic weakness. On the other hand, depending on the health status of the person in need, it could be the carers who take complete control of the benefit and the care arrangement, without respecting the older person’s wishes and needs. In short, external guidance, support and monitoring are essential to cash-‐centered personalized service provision. This is equally the case regarding services in kind: though providing services to older people may, at first sight, seem to be in the best interests of informal carers, as these services take over ‘hands-‐on’ care, conflict of interest may nevertheless arise as the cared for older person may not agree to the substitution of the family carer by a professional worker. Similarly, respite care will bring the expected relief to informal carers only if they feel that the proposed setting guarantees a good quality service and is appropriate to the older person’s care needs, while being acceptable to the older person. On the other hand, it may be that accommodation is planned according to the user’s needs while not responding to the informal carer’s situation or expectations. This is also true for measures at an organisational and policy level, such as flexible working arrangements to allow informal carers to care and to work: when not based on specific or general labour regulations, but only on colleagues’ good will, their level of take up and thus impact are rather limited. This latter point calls for a broader approach to the formation of support policies for informal carers, extending their scope into labour and work policies (as for child care), which implies a different governance approach. So the issue of whose needs are or should be targeted in LTC policies has to be clearly addressed: building a sound policy for older people does not automatically imply an appropriate policy for informal 39
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