The system of services for people with intellectual disabilities has undergone notable structural changes in Western countries in the latter half of the twentieth century, which are often described by the term ‘deinstitutionalisation.’ This term refers to a process in which long-term institutional care is replaced with forms of support that enable people with intellectual disabilities to live in the community.In its more mature stages, the process has also involved changes in the relationship between people with intellectual disabilities and those who provide support for them. Today, the ability of people with intellectual disabilities not only to live in the community but also to acquire greater control over their lives and make self-directed choices is emphasised in the development of community-based provision.
However, this process is not always linear. In the United Kingdom, for instance, the reality for the development of disability policy has been one of growing ambitions set alongside increasingly limited funding. Consequently, at the same time as policy has shifted from institutional and paternalist thinking towards enabling greater choice and advancing social inclusion, the criteria of who qualifies for publicly funded support are tightened. In fact, strict methods of prioritisation have been implemented, and large numbers of people have been pushed beyond the remit of eligibility, leaving them with little opportunities for choice (Roulstone and Prideaux 2012; see also Simpson and Price 2010).
This kind of coexistence of progressive and regressive elements characterises the development of disability services in many other countries as well. In this article we argue that this development cannot be fully understood without taking into account the influence of macro-level economic policies, which have in most of the world's countries been reshaped in recent decades by neoliberal ideology (Harvey 2005; Saad-Filho and Johnston 2005; Steger and Ravi 2010). The way in which neoliberal economic policies shape and complicate the deinstitutionalisation process has recently been paid attention by a number of researchers, who have written mainly in a British context (Parmenter 1999; Mansell 2006; Simpson and Price 2010; Malin and Race 2010; Slorach 2011; Roulstone and Prideaux 2012). In this article, we try to show that even though the history of disability services has unique features in each country, their observation about the role of neoliberalism has wider applicability. We explore the ways in which the neoliberal shift in economic policy has influenced the development of the system of services for people with intellectual disabilities in Finland. Drawing on earlier research, we attempt to identify which neoliberal economic reforms were the most crucial in this respect and to explore their effects.
In conjunction with this, we provide a theoretical interpretation of neoliberalism, emphasising its political character.
Any definition of neoliberalism must acknowledge its multifaceted nature. We distinguish between neoliberalism as: (a) an academic theory; (b) a set of policies; and (c) a political project. In the following we briefly describe each of these dimensions of neoliberalism.
As an academic theory, neoliberalism belongs to the field of political economy. Although it comes in several varieties,1 there are certain fundamental beliefs that distinguish this school of thought. It is characterised by the conviction that the ‘free markets provide the optimal organising mechanism for capitalist economies’ (Lapavitsas 2005, 30). Consequently, it seeks to maximise the reach and frequency of market transactions in the society (Harvey 2005).
Neoliberal theory consists of a reassertion of the dogmas of classical liberalism, which was the dominant ideology of the nineteenth century but was challenged at the beginning of the twentieth century. Sharpened awareness of the social problems engendered by capitalism and the rise of a politically organised working class had strengthened the demand for social reforms. The ideas developed by economist John Maynard Keynes offered what seemed to many like a feasible solution. Adoption of Keynes's ideas as the guiding principles in economic policy in the Western world after the Second World War led to the development of a ‘Keynesian’ welfare state based on a systematic application of fiscal policy as a means of redistribution and on macroeconomic regulation to remedy the deficiencies of the market. The first formulations of neoliberalism represented conservative resistance to these developments and to the even more radical forms of state-centred planning, which emerged in the East (Clarke 2005; Harvey 2005; Steger and Ravi 2010).
Being first an academically and politically marginal theory, neoliberalism has today replaced Keynesianism as the leading political-economic ideology globally. Neoliberal doctrines have advocates in influential positions in universities, many ‘think tanks,’ media, key state institutions such as treasury departments and central banks, and in international institutions such as International Monetary Fund (IMF), the World Bank, the World Trade Organisation (WTO) (Harvey 2005). This is despite the fact that the critics of neoliberalism have repeatedly revealed how simplistic and unrealistic the assumptions that it is based on are (see e.g. Clarke 2005; Harvey 2005, 67–70; Shaikh 2005). For example, it presumes that the agents participating in market transactions are equal, while in the real world there are typically asymmetries between them of power, of information, and of capacities making rational economic choices. However, the lack of analytical rigor should not prevent us from recognising the ideological appeal of the neoliberal theory, to which it owes its strength. As Clarke (2005, 58) points out: ‘to argue that the neoliberal model is unrealistic is somewhat to miss the point, since the neoliberal model does not purport so much to describe the world as it is, but as it should be.’
Neoliberal theory has been translated into concrete policies. Neoliberal policy package is characterised by what Steger and Ravi (2010, 14) call a ‘D-L-P formula,’ for deregulation, liberalisation, and privatisation. It includes policy measures such as deregulation of financial markets, privatisation of state-owned properties and enterprises, attacks on trade unions and the power of the professions, weakening of institutions of social security, smaller government, tax cuts for the rich, acceptance of higher unemployment levels, and facilitation of international flows of capital and goods. During recent decades this policy package has been applied in some form in almost all of the world's countries (Harvey 2005; Steger and Ravi 2010).
Neoliberal theory was consolidated as an economic orthodoxy regulating public policies in the 1970s. The economic crises of time – oil shocks, rising unemployment and runaway inflation – set the stage to this turn. They enabled Margaret Thatcher, the prime minister of Great Britain, and Ronald Reagan, the president of the United States, to justify radical neoliberal reforms in their countries, providing an example that was soon followed in other parts of the world. It is a measure of the depth of the transformation they initiated that it was often not reversed by progressive parties when they later came to power, such as ‘New Labour’ in Great Britain and the Democrats in the US in the 1990s (Harvey 2005; Steger and Ravi 2010; Jutila 2011, 196).
The effects of neoliberalisation have been quite different from those that the neoliberal theory leads us to expect. Inequalities have sharpened, the level of unemployment has risen, economies have become unstable, and the living conditions of the majority have deteriorated. At the same time, there are some who have benefited enormously from neoliberalisation: it has allowed money to flow to the local rich in many nations and, globally, to the US (Harvey 2005; Saad-Filho and Johnston 2005).
Facts about the way in which neoliberalisation allocates costs and benefits lead us to the third dimension of neoliberalism, shedding light on its nature as a political project. This dimension, which has been highlighted especially by researchers in a resurgent Marxist tradition, offers an explanation for why the neoliberal turn occurred, despite its weak theoretical basis and destructive effects. This dimension becomes most clearly visible in figures that show a reversal of the trend of a relative decline of the income and wealth of the wealthiest fraction of the society, which was an inherent part of the post-war social contract. In the US, for example, the share of the national income taken by the wealthiest 1% reduced in the three decades after the war from 16% to less than 8%. After the implementation of neoliberal policies in the late 1970s, this proportion increased to 15% by the end of the century, almost the same as its pre-war share (Duménil and Lévy 2005; Harvey 2005).
But if neoliberalism is a project aimed at restoring the income and wealth of the topmost class, how is it possible to drive through such an unpopular project in democratic countries? Harvey (2005) utilised Gramsci's (1971) concept of ‘common sense’ to explain the democratic acceptance of neoliberal reforms. Common sense is constructed out of long-standing practices of cultural socialisation often rooted deep in regional and national traditions. It is not the same as ‘good sense,’ which can be constructed out of critical engagement with the issues of the day. Common sense can therefore be misleading, and can be mobilised to mask other realities.
In Finland, for example, there is a long tradition of consensual policy-making. According to Finnish political historian Kettunen (2004), this tradition presupposes a commitment to a predefined common interest, which is usually described as adaptation to an external necessity. Consensus is not the same as compromise: the latter requires an acknowledgement of the differences between the interests of different groups, while the former downplays them. The state apparatus occupies a central role in consensual policymaking in Finland. Finns have a tendency to trust the state, but their trust is based on a very different notion of the state than for example in Sweden. The idea that the state can be conquered and changed into an instrument of political will, which is central to the Swedish social democratic tradition, is alien to the Finnish culture. In Finland, state planning is not seen as serving political goals. Instead, rational planning is seen as a property of the state.2 Within this kind of culture, top civil servants have traditionally been capable of defining the framework of ‘necessities’ within which the state is expected to operate. In the next section we explain in greater detail how the tradition of consensual policymaking has functioned as the channel through which neoliberal reforms have been driven.
Even though a neoliberal shift in political-economic practices and thinking has been observable in most of the world's countries in recent decades, its scope varies between countries, as existing institutions and local political forces affect the ways in which neoliberal doctrines are applied (Harvey 2005). In this section, we describe briefly the way in which the neoliberal turn has occurred in Finland. Earlier research tells a fairly unanimous story (Julkunen 2001; Pollitt and Bouckaert 2004; Patomäki 2007; Jutila 2010, 2011). It is a story of a subtle, gradual transformation, which has to a large extent been the work of a small group of key cabinet ministers (notably the prime minister and the minister of finances) and the senior civil servants of the ministry of finances. This transformation has been going on for over two decades despite the change of political parties in government. Piecemeal neoliberal reforms have been treated as apolitical matters. As a result, today there is a contradictory situation in Finland, in which open proponents of neoliberalism are extremely hard to find, yet the Finnish economy and public sector have been reformed following neoliberal dogmas for over two decades.
The deregulation of financial markets at the end of the 1980s has been seen as the beginning of the neoliberal era in Finland. The sudden increase in the availability of loans led to the overheating of the economy and an eventual recession at the beginning of the 1990s, which was deepened by the simultaneous collapse of trade with the Soviet Union. At that time, neoliberalism had already been consolidated as the leading ideology internationally. The recession, which was the most severe in the country's history since the 1930s, provided an opportunity to take further steps on the road to neoliberalism and to cut back on the welfare state. In normal circumstances this would have been likely to meet popular resistance, since the vast majority of Finns supports the welfare state, but during the recession it was possible to persuade them that the cuts were necessary. The strategy was to use a ‘cheese slicer’ – an expression used by politicians, which meant making cuts everywhere, without demolishing any social programme completely (Julkunen 2001; Patomäki 2007; Jutila 2011, 2011).
It was only after the recession subsided that it became evident that the cuts were designed to be permanent. They have continued up until today, though in a much more subtle fashion than during the recession. For example, income transfers, which were cut across the board in the aftermath of the recession, have not kept pace with the rising costs of living or with wages, which has resulted in their deterioration in real terms. The other side of the coin of the welfare state retrenchment has been tax cuts for enterprises and wealthy individuals, which have contracted state revenues, and made it more difficult to improve the welfare state (Jutila 2011, 2011).
In Finland, the neoliberal turn has also involved reforms in public administration. These reforms have followed the doctrine of New Public Management – a variant of neoliberal theory, which seeks to impose market principles on the practice of public administration. Administrative reforms have included, for example, the introduction of results-oriented and frame budgeting, decreases in the number of staff, increasing user fees, privatisation, outsourcing, and decentralisation. The reforms started in the late 1980s and continued through the next decades in a fairly similar form. They have been driven through as if they were mere technical operations, in other words, their political nature has been obscured (Pollitt and Bouckaert 2004; Patomäki 2007).
In Finland the first institutions for people with intellectual disabilities were built at the beginning of the twentieth century. The building of institutions was accelerated by the 1958 Act on Mental Retardation, which defined them as the primary form of public service for people with intellectual disabilities (Finnish Information Center on Intellectual and Developmental Disabilities). The country was divided into 15 special care districts. A special care district is composed of several municipalities, which maintain jointly an institution for people with intellectual disabilities. The number of people with intellectual disabilities in institutions continued to grow up until the mid-1980s (see Figure 1);.at that point it added up to nearly 8000 people. However, it is worth remembering that in Finland the majority of people with intellectual disabilities were not placed in institutions, but lived with family members, most often with their parents (Tarvainen 1966, 66–67). Consequently, it seems that institutions were aimed primarily at those people whose families could not cope with their caring responsibilities.
As in the other Nordic countries, the public service system in Finland was centred at first on institutional care, and there were hardly any other forms of support available for people with intellectual disabilities or their families. Nevertheless, community-based services had already started to develop in the era of institutions. The 1958 law that made central institutions the main form of care for people with intellectual disabilities allowed also the building of day-activity centres, even though it demanded that they should be kept under the surveillance of the central institutions. Day-activity centres, aimed at children at first, grew in number during the next decades, so that by the end of the 1970s there were over 100 units in the country. At that time, the day-activity centres had started to differentiate, so that some of the units specialised in education and some in work. The first group homes were set up in the mid-1970s (Vesala 2003, 17–18).
Eventually, the 1977 Act on Special Care for the Mentally Handicapped (519/1977) opened up the possibility for broader development of community-based services (Finlex). This act, broadly speaking, is still in force. It gave priority in the organisation of support for people with intellectual disabilities to mainstream social and health care services. However, for those for whom these services are not sufficient, the municipality has to provide other services, such as housing, education, sheltered work, and day care.
This act can be seen as a practical reaction to the critique of long-stay institutions that has spread internationally, inspired first by Goffmann's Asylums (1961), which showed the destructive effects of institutions on the people who lived in them. Later, the critique of institutions was fuelled by the development of the so-called ‘normalisation principle,’ for which Nirje (1969, 1970, 1985) was the first to give a clear and elaborate definition. Nirje acknowledged that people with intellectual disabilities possessed citizenship no different than that of their fully abled fellows and argued that they should be given access to the kind of living conditions and life styles that are predominant in their societies.
The ‘Special Care Act’ allowed municipalities to start investing in community-based services, which then started to grow faster (Paara 2005, 39). However, institutional care continued to grow simultaneously. In the1980s, both non-governmental and governmental working groups expressed their support for decreasing institutional care (Paara 2005, 30). Attitudes started to change, and the growth of the number of people with intellectual disabilities in institutions halted. However, there were not any significant reductions in this number until the 1990s (see Figure 1). The acceleration of deinstitutionalisation coincided with economic recession and ensuing cuts in welfare expenditure, as described earlier in this article. This restructuring encompassed not only the care of people with intellectual disabilities, but also that of elderly people and psychiatric patients. The replacement of institutional care by community-based services was seen by the government as a measure to enhance the economic efficiency of service provision. Interestingly, in the case of people with intellectual disabilities this change was not expected to bring savings, but it was nevertheless seen as appropriate to carry it out at the same time as the institutional care of other groups was being reduced (see Finnish Ministry of Social Affairs and Health 1992).
For Finns with intellectual disabilities, the process of deinstitutionalisation is still ongoing. In 2010 there were about 1800 people with intellectual disabilities in long-term care in institutions in Finland (Sotkanet). In the same year, the government made a decision-in-principle to bring that number down to zero by the year 2020 (Finnish Ministry of Social Affairs and Health 2012). It has been estimated that there are 35,000–40,000 people with intellectual disabilities in Finland. Those not covered above live either in a family setting, independently, or in housing services (Niemelä and Brandt 2008, 50).
Community-based housing services have developed into several different forms. People using them live usually in group homes, where assistance is available for them either during the day or round-the-clock. While the majority of the housing services provided for people with intellectual disabilities are of this kind, those with lesser support needs can also live in their own homes, receiving assistance less frequently than in group homes. In 2010, at least 9000 individuals with intellectual disabilities used some of these forms of housing services (Sotkanet).3
Possibilities for independent living were enhanced by the 2009 reform of the act on Services and Assistance for the Disabled (380/1987), in which personal assistance was defined as an unconditional right for those with severe disabilities (Finlex). According to a report from the Finnish Ministry of Social Affairs and Health (2006), today Finnish disability policy is based on three principles: ‘equality,’ ‘inclusion,’ and the provision of ‘necessary services and supportive measures,’ to all of which disabled people are seen as having the right. However, these policy statements are not completely congruent with the underlying reality. In the next section, we will show how the application of neoliberal economic policies simultaneous to the pursuit of the goals of disability policy outlined above undermines the achievement of those goals.
On the level of Finnish state agencies, neoliberal policies are driven especially by the Ministry of Finance. Its transformation into a stalwart supporter of neoliberal doctrines and the increase of its power over public affairs are an integral part of the neoliberal turn in Finland (Patomäki 2007). Today, the Ministry of Finance is able to limit the budgets of other ministries and to plan administrative reforms that cover the whole public sector. In this sense, it has significant influence on disability policies, as we will show later in this article.
We pointed out earlier that in Finland the deinstitutionalisation process was accelerated by the political imperative to curb welfare expenditures. However, the repercussions of the neoliberal turn in the system of services for people with intellectual disabilities are much wider than that: neoliberal economic policies also shape the development of alternative services on a local level. In the following we describe four distinct, yet interrelated neoliberal polices framing their development: curbing the costs of welfare, reducing the number of employees on a public payroll, privatization of social and health care services and informalisation of social care. We also try to analyse their effects with the help of the information provided by existing reports and statistics. Existing information on this issue is still relatively scarce in Finland; nevertheless, examining this information provides the possibility of making tentative inferences about their problematic features.
From the 1990s onwards, the political aim to limit and reduce the costs of welfare has dominated the evolution of the Finnish welfare state (Julkunen 2001). The budgets of social and health care services have been among the targeted expenditures. In Finland, municipalities have the responsibility to organise and manage these services, while the state indirectly controls their operation through financial subsidies and legislation. The 1993 reform of the system of state subsidies simultaneously reduced the level of these subsidies and inaugurated frame-budgeting, thus delegating the painful decisions about how to adjust diminished financial resources to municipalities (Julkunen 2001, 118–119; Pollitt and Bouckaert 2004, 242). After the initial cuts, the state subsidies have been further cut several times using different techniques, for example declining to raise them in line with the price index (Helin 2009; Jutila 2011, 200). The current government, too, has plans for further cuts in state subsidies to municipalities (Government of Finland 2011, 149).
Consequently, Finnish municipalities have been left to balance between their legal responsibility to provide services on the one hand and constantly diminishing budgets on the other. The provision of services for people with intellectual disabilities has not been impervious to the declines in the financial resources of municipalities. Budgetary constraints have slowed down the development of community-based services and discouraged long-term planning (Paara 2005, 45–46). At the same time, increasing municipal autonomy in the use of state subsidies has increased differences between municipalities in the provision of services for people with intellectual disabilities so starkly that it is not likely that it reflects only differences in the needs of service users (Nummelin 2009).
In the official discourse, this policy is often portrayed as an effort to increase ‘productivity’ in the public sector. For example, in 2003 Prime Minister Matti Vanhanen's first cabinet launched a government productivity programme to increase the availability, quality, productivity, and efficiency of public administration and services. However, the National Audit office (2010) concluded in an evaluation of the programme that its actual content was determined by the government's decision in 2005 that only every other job opening in the state administration would be filled. Consequently, in practice the programme's focus was limited to reducing the number of employees in the public sector.
Evaluated in these terms, the programme succeeded very well. The number of employees in the state administration was reduced by several thousand (National Audit Office of Finland 2010). This was on top of reductions already achieved before the programme was launched (Pollitt and Bouckaert 2004, 243). At the same time, the programme had weakened the capacity of public agencies to provide services (National Audit Office of Finland 2011). This implies that the performance and quality of services have been of secondary importance in the reforms of the public administration, being subordinate to the political aim to reduce the number of employees on the public pay-roll.
Interestingly, a report from National Audit Office of Finland (2010) highlights the leading role of the Finnish Ministry of Finance in the planning of the programme in question, and points out that it presented misleading calculations to argue its necessity. This gives support to the view, presented earlier in this article, that the Ministry of Finance has become the main architect of the neoliberal reforms in Finland. In 2010 the Ministry of Finance launched a ‘productivity programme’ that focused on municipalities, the aim of which is to reduce significantly the number of employees in the municipal sector as well (Finnish Ministry of Finance 2010). This is despite the reductions in staff sizes that have already been made as a result of the cuts in state subsidies (see Finnish Ministry of Social Affairs and Health 1992, 10).
Consequently, efforts to increase productivity (i.e. to produce services with fewer personnel) are familiar to municipalities even in the absence of a new programme from the Ministry of Finance. While existing statistics about the employees in the social and health care services do not specify the proportion working in the housing services for people with intellectual disabilities, several studies indicate that municipalities have been limiting the number of employees also within this sector. Over 15 years ago, Toivanen and Syrjälä (1997, 105) concluded, based on observation of housing units in different parts of the country that the number of personnel is kept to a minimum level. Recent reports show that the situation has not improved. Harjajärvi's (2009, 41) interviews with local authorities in charge of housing services for people with intellectual disabilities in 48 municipalities showed that they view insufficiency of personnel resources as an acute problem. Another report on the experience of deinstitutionalisation in two Finnish provinces, which was based on interviews with municipal authorities, employees and family members of service users, concluded that in some housing units the personnel resources are so constricted that managing even small changes in daily routines, such as a visit to the doctor, is extremely difficult (Pelto-Huikko, Kaakinen and Ohtonen 2008, 35).
The social and health care sector was opened up for private service providers in the early 1990s. In Finland, the utilisation of private service providers is based on a ‘contracting-out’ system in which the services are purchased by public funds and the choice of service provider is made by the office holders (Haveri 2000, 62–63). Competitive tendering -has been adopted as the method of making the choice. The 2010 Act on Public Purchases (321/ 2010) made competitive tendering obligatory for purchases of social and health care service sector that cost over 100,000 euros (Finlex). In practice, the price of a service is the determining factor in the choice of service provider (Eronen et al. 2007, 143–6).
Competitive tendering is often expected to curb the costs of service provision. In practice, competitive tendering does often decrease the costs of producing a service, but at the same time it generates other costs through the procedures it requires, which is why it is difficult to estimate how much real savings it brings, if any (Kähkönen 2005). However, even though it would not be the most cost-efficient way of producing services for municipalities, competitive tendering can be seen to advance the neoliberal project in other ways: it opens up new fields for private profit-making.
The proportion of social and health care services produced by private service providers has slowly, but steadily increased in Finnish municipalities over the past two decades (Stakes 2007, 32), and in the realm of services for people with intellectual disabilities (Nummelin 2009, 67). In 1995, 15% of group homes for people with intellectual disabilities were run by private service providers, while in 2010 the proportion had grown to 35% (Sotkanet). However, it should be noted that here the term ‘private service providers’ comprises both enterprises and third-sector organisations, whose operation is based on different principles. Third-sector organisations do not seek profits, but work to promote the well-being of their members, of a special group of people, or of a larger part of the population. The services they provide are based on specialised expertise. In addition, they often involve voluntary work and peer support (Stakes 2007, 47–8; Särkelä, Vuorinen, and Peltosalmi 2005, 18, 85, 94). The majority of the private service providers in the realm of services for people with intellectual disabilities have been third-sector organisations, which in 2004 provided 65% of private housing services for people with intellectual disabilities (Stakes 2007, 64).
However, third-sector organisations are facing new challenges in the marketised environment. Due to political aims to maintain competition in the realm of social and health care services, the funding and tax breaks they have relied on are at stake, because they are seen to distort competition. The organisations have reacted to these challenges in different ways. Some have corporatised their services; some have given them up; some are uncertain about the possibilities to continue their service production (Särkelä, Vuorinen and Peltosalmi 2005, 60–6, 80–95; Vuorinen, Särkelä and Peltosalmi 2008, 140).
These privatisation practices help to keep the doors open for for-profit companies. There are indeed signs of big, often international corporations taking over the production of health and social care services (Särkelä et al. 2005, 79; Eronen et al. 2007, 143–6; Meriläinen 2010). It is undoubtedly an alluring business for them, considering how much money is involved, and how small the risks are. However, the profit seeking motive can easily contradict the responsibility to take good care of service users, as seen for example in the recent media scandal around Carema Care, a Swedish company providing elder care services (see Hökerberg 2011; Danielson 2012).
In the mid-1980 municipalities were already allowed to make payments to informal carers of older, disabled, and/or chronically ill people. At the beginning of the 1990s support for informal care was included in the social care services that municipalities are legally obliged to provide. The 1993 Decree on Support for Informal Care (318/1993) included in it both a remuneration paid to family carers and services supporting family care, such as respite care (Finlex). In 2006, the minimum of financial compensation was set to 300 euros and family carers were given an entitlement to three days off a month by the Informal Care Act (937/2005, Finlex).
The government bill (174/1992) proposing the establishment of support for informal care argued that ‘one cannot diminish the pressures to increase institutional care without developing different forms of community care and improving the status of carers’ (Finlex). In other words, support for informal care was seen as an integral part of the deinstitutionalisation process and a necessary complement to other forms of community care. The discourse of necessities was once again employed to argue for political reform. Nevertheless, the political subtext of the reform is not difficult to infer. Support for informal care costs far less than any of the existing forms of community-based housing services (Salanko-Vuorela et al. 2006, 38). As Parker and Clarke (2002) have pointed out, supporting informal carers provides policymakers a way to stay committed to community care while keeping the costs of welfare in check.
In this sense, support for informal care is a social programme par excellence in the neoliberal era. Indeed, it has been one of the few social programmes whose coverage has increased during the past decades in Finland. The number of people who are cared for by means of support for informal care has grown by 150% since it became an established social service, amounting to 46,000 in 2010 (Association of Finnish Local and Regional Authorities 2012). In 2006, about one fifth of those had intellectual disabilities (Voutilainen, Kattainen and Heinola 2007, 28).
It seems that budgetary constraints are eroding a rights-based eligibility for services. This trend is evident for example in the provision of housing services for people with intellectual disabilities. According to a recent report (Harjajärvi 2009), several municipalities were unable to fully meet the existing demand for these services. The greatest gap between provision and demand was in housing with 24-hour assistance. Only half of municipal representatives reported that this service could be provided to everybody who requires it. Demand exceeded provision in housing with part-time assistance. As to independent living, the representatives of the municipalities reported that they did not have problems providing flats themselves, but did have problems in providing an adequate amount of support for the people living in those flats. The representatives indicated that limited availability of services results largely from the lack of financial resources. In other words, at the moment the provision of housing services are provided contingent on budget constraints, and not as an unconditional right.
Existing reports reveal several ways in which the quality of community-based housing services in Finland has become compromised. First, in many local housing units the lack of personnel hampers the efforts to provide a full range of support for the residents and address their individual needs. Municipal authorities, family members, and staff themselves have expressed concerns about the way in which tight personnel resources have increased time pressure in housing units, leaving staff with little time for anything other than the most basic maintenance. For example day activities, chances to exercise, and other leisure options have been reported to be scarce (Harjajärvi 2009, 41; Pelto-Huikko, Kaakinen and Ohtonen 2008, 24–7).
Second, the ability of employees to deliver the new approaches (in terms of having necessary skills and competences) is doubtful, as financial pressures have held municipalities back from investing in training and retraining (Hintsala, Seppälä, and Teittinen 2008, 141). Without proper training it can be difficult for employees to adapt to the new role of the service users as self-determining agents and persons in their own right. The lack of training, accompanied by the lack of personnel has led to unwarranted use of coercive measures on users of housing services for people with intellectual disabilities such as locking them inside the house, isolating them, and tying them up (Kumpuvuori 2006).
Third, due to the limited availability of services it is not uncommon for services to be provided on the basis of their availability rather than their suitability for the service user in question. For example, in some municipalities people who need 24-hour assistance have been placed in housing with only part-time assistance, while in some other municipalities people who could manage with part-time assistance have been placed in housing with 24-hour assistance because those were the only services available (Harjajärvi 2009, 24).
Finally, the attempt to provide public services at as low a cost as possible has led to very questionable solutions in the design of the constructed environment for people with intellectual disabilities. For example, in the province of Pirkanmaa there are plans to build a huge institution-like housing centre for 70–100 inhabitants for people with intellectual disabilities and other special needs groups. In the province of Pohjois-Savo, the city of Kuopio has rejected in competitive tendering service providers that offer housing for people with intellectual disabilities only in single rooms (Finnish Association on Intellectual and Developmental Disabilities 2010). While these solutions may be cost-efficient, they have little in common with the mainstream housing models in Finland.
It has always been common in Finland for people with intellectual disabilities to live with family members, and it seems that current policies are designed to maintain this state of affairs. In 2004, half the people who used special services lived with family members (Kumpulainen 2007, 3). Among the entire population of people with intellectual disabilities, the proportion is likely to be even higher, since some of them do not use special services and instead live either independently or with family members.4 The family members that people with intellectual disabilities live with are almost always their parents (Vesala and Matikka 2000, 25).
The proportion of people with intellectual disabilities living with family members varies by age group. Living with family members is most common among children: almost all of them live with their parents. However, many people with intellectual disabilities continue to live with parents into adulthood. In 2004, the proportion was 40% in the group of 18- to 49-year-olds and 15% in the group of over 50-year-olds among people using special services (Kumpulainen 2007, 33–5).
From the perspective of the normalisation principle, current community care policies involve an interesting contradiction. While enabling children with intellectual disabilities to live with their parents can be seen as a positive development, the high number of adults who have not moved away from their childhood homes raises concern. The report of Ministry of Social Affairs and Health (2006) on Finnish disability policy does acknowledge that 'people with disabilities have a right to move away from their parents, set up a family, get a job and live according to their individual lifestyle in terms of housing’ (15). Yet many are unable to enjoy this right due to the limits neoliberal economic policies set on the provision of services in municipalities. Since people with intellectual disabilities often need some kind of support to move away from their parents and start a life of their own, the limited availability of such support is an obvious barrier to accomplishing this life-course transition. According to Miettinen (2012), current policies maintain the high prevalence of family care among adults with intellectual disabilities also in more subtle ways. The compromised service quality feeds mistrust of the service system in parents and allows them to hold that the needs of adult children with intellectual disabilities are best met at home by their families, which discourages parents from searching out alternatives to family care.
From the perspective of family members familialisation of care means a halt or reversal of sharing the costs of disability more evenly between families and the wider community (Mansell 2006, 71). While parents are entitled to support for informal care in all ages of a child with disabilities, the way in which this programme is designed to function as a cost-containment measure means that the provided support is not ample. The allowance paid to family carers does not, for example, compensate for lost incomes or pensions even though it is often difficult for both parents or a single parent to work full-time, sometimes being unable to work at all. In addition, in-home and respite care services are strictly rationed (Miettinen, Engwall and Teittinen,forthcoming).
Several reports indicate that the working conditions of staff in housing units for people with intellectual disabilities have been adversely affected by the neoliberal turn. Pelto-Huikko, Kaakinen, and Ohtonen (2008, 35) reported that as employees have been transferred to smaller units their workload has increased due to changes in care practices and relative decreases in staff size. In a survey study conducted among basic care level workers within services for disabled and older people, Kröger, Leinonen and Vuorensyrjä (2009) found that many of them felt that the number of people they cared for was too high. Almost half of the care workers were impacted by this issue during day shifts, and over half during weekend and night shifts. The majority of the employees experienced constant physical fatigue and almost half of them constant mental fatigue. In addition, half experienced sleep problems.
The well-being of staff, and the way in which high staff turnover affects the service users, is currently a major concern among Finnish municipal authorities (Harjajärvi 2009, 41). In addition to a heavy workload, care workers are low paid and periodic employment is common: one-fifth of Finnish care workers have a fixed-term employment relationship (Kröger, Leinonen and Vuorensyrjä 2009, 49). These issues may at least in part explain the problems in recruiting care workers that municipalities are currently facing (Eronen et al. 2007, 52). Even among the currently employed, over one in four care workers has seriously considered quitting their job (Kröger, Leinonen and Vuorensyrjä 2009, 35). Worsening working conditions seems to endanger the availability of committed, motivated employees in the services for people with intellectual disabilities.
For the past two decades in Finland the development of the system of services for people with intellectual disabilities has taken place at the intersection of a progressive disability policy and a neoliberal economic policy. At the same time as long-term institutional care is drastically diminishing and the emphasis in the development of services is shifted to social inclusion and self-determination, a political consensus has emerged on the need to cut back the welfare state and develop a mixed economy welfare. The interaction of these two different, simultaneous processes directs the development of the service system in ways that are not observable if we look at disability policy alone.
Macro-level economic policies influence the development of services for people with intellectual disabilities by shaping its preconditions. In Finland, the effects of the neoliberal shift in economic policy seem to be two-fold. On one hand, this shift has precipitated the deinstitutionalisation process; while attitudes had already started to change in favour of deinstitutionalisation before the economic reforms of the 1990s, the progress achieved in practice had been quite modest until deinstitutionalisation became integrated into the neoliberal project of curbing public expenditure. On the other hand, neoliberal economic policies seem to have hindered the development of community-based services. While the provision of these services has undeniably grown, the financial austerity that has been imposed on municipalities has discouraged them from investing in quantity and quality enough to take them to a level at which the support needs of all people with intellectual disabilities can be met in a comprehensive way. In addition, the constant preoccupation with cost containment in the public sector may, by limiting the number of staff in community-based housing units and not devoting resources to their training, function as an obstacle to achieving greater personalisation of support.
In this article we have challenged the idea that the current economic preconditions of the system of services for people with intellectual disabilities in Finland are somehow inevitable, which is the way in which all neoliberal reforms have been framed in a consensus-oriented Finnish political culture. Instead, we have emphasised the political nature of these preconditions. This means that we also believe that there are alternatives. It remains to be seen whether these alternatives will be realised or whether policymakers will continue to follow the path of neoliberalisation. The latter choice will most likely result in widening of the gap between the goals of disability policy and reality.
3. The figure describes the number of users of housing services that are provided on the basis of the Special Care Act. People with intellectual disabilities can receive housing services on the grounds of other legislation as well. However, the number of people with intellectual disabilities receiving services in this way is unknown, since the existing statistics describe only the use of different types of services, and do not include information on the conditions of the people using these services.
4. In 2004 special services were used by 27,000 people, while it is estimated that there are 35,000–40,000 people with intellectual disabilities in the country in all (Kumpulainen 2007, 7).
The work of the principal author of this article was funded by a postdoctoral research project grant (134285) from the Academy of Finland. We would also like to thank our colleague Hannu Vesala for providing the statistical data for Figure 1.
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