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Issue 1, 2016

Abstract

Long-term care is a new area of social protection that is based on the users’ needs and their understanding of the quality of life. In many countries direct payments are an important part of the long-term care system. Discussed in the article is the development of direct payments in Slovenia and other European countries. Different systems of long-term care and direct payments schemes are presented. In Slovenia long-term care is provided by different legislation and by different pillars of social security, as an integrated system long-term care has yet to be established. Experiences of the pilot project in direct founding with the resettlements to the community are presented in the last part of the article. Direct payments are very effective when resettling people from institutions to the community. New solutions for the new long-term law that will promote deinstitutionalisation and the development of community services are suggested.

Introduction¹

The adoption of the long-term care law in Slovenia has been awaited for many years. The existing draft law has survived five governments and six ministers, and is yet to be passed. Questions posed by long-term care still remain the same and are still unresolved. It is clear that the existing system of providing long-term care in Slovenia is not coordinated, but regulated by different laws, it is unfair to the users with similar needs but fall in different legal categories, creates differences between them and it prefers institutional care to community care. The fact is that the existing system in Slovenia is not adequate and there is a need for comprehensive reform. Above all, long-term care needs re-defining.

The conceptual framework, on which long-term care law should be based, will be discussed. In particular there will be a focus on direct payments, as they can be an effective tool for the establishment of the system, which will encourage a shift from institutions. International experience, in this context, will be investigated to garner a wider perspective towards the community. Then, the current situation of long-term care in Slovenia will be presented, warning of its contradictions and shortcomings. Finally, the proposal of the act on long-term care and long-term care insurance, which was created under the auspices of the Ministry of Labour, Family and Social Affairs, will be examined, focusing primarily on those elements of the proposal that promote or inhibit deinstitutionalisation. Using the results of the experiment on direct funding of care (Flaker et al., 2007, 2011), proposals to the law will be made to ensure resettlements to the community for long-term residents of institutions and a gradual but quick-closing of social care homes.

Conceptual Framework of long-term care and direct payments

In the last two hundred years, long-term care² moved from its natural environment, the community, to institutions. The whole world has seen the rise of a variety of specialised care facilities for people with various disabilities: a madhouse for lunatics, care homes for older people, training centres for the intellectually disabled, institutions for education and rehabilitation for the physically disabled. Already in the nineteen fifties (Jones, 1952) the world began to realise their inefficiency and inadequacy for human life. The first attempts at deinstitutionalisation and transformation of these institutions have been made in recent decades, and long-term care that is focused on community care and user involvement has been developed. The notion of long-term care is based now on users’ independence in their own home and on their participation and control in planning and provision of their services.

As Flaker et al. (2008, pp. 21, Flaker, 2011, p. 60) state, long-term care is: ‘A phenomenon, which brings innovation in the area of social care, in particular as a completely different paradigm sui generis, goes beyond the old forms of organisation of care, methods of approach to human need, the status of users and the core of the processes of help. Long-term care is a paradigmatic rupture and breakthrough, creating new forms of solidarity, help and professional knowledge. By establishing new mechanisms of social protection, new organisational structures and new ways of providing help and support, long-term care has to face the challenge of setting up new answers and services on different levels that will overcome old divisions, paradoxes and injustices to individuals and groups.’

Throughout its history, the care for people who need continuous, organised and integrated care, has been delivered in several ways. It has been divided among the various types of social and health care institutions and services, financed by different funding streams, provided by various types of services, based on different professional ethics and different cultures of care (e.g. social work and health care). Providing contemporary care is a new area that connects professionals from social and health care, to their common goal which is to provide quality personal service to the users (Kodner & Spreeuwenberg, 2002, p. 2).

The concept of long-term care is based on the social model of disability (Oliver, 1996; Škerjanc, 2006), which puts the person and their needs first, rather than their status or diagnosis. Entitlement is based on the needs of the claimants rather than on their employment status or level of contributions paid to the insurance fund (Flaker et al., 2008, p. 22). It is therefore based on the principle of universality, which means that everyone, regardless of disability, age or financial status, is entitled to care. Long-term care is an ordinary social risk therefore it has to be covered by social policy. Most people are unable to cover the costs of long-term care from their own resources without impoverishing themselves and their families. Universal access to long-term care in the community provides security against poverty, against the disastrous effects of institutionalisation (Jones, 1952) and ensures the involvement of all people regardless of their assets and resources (Brodsky et al., 2003).

A change in the relations between users, their carers and professionals is a pre-requisite for the new paradigm of long-term care. A dependant and patronising relationship is created between the user and the professionals within institutions, community long-term care liberates the users’ independence and puts them in a partnership with the professionals. Valued roles are assumed by the user and this connects them to the community. The user becomes an active creator of their own destiny, as they design, select and plan services for themselves. Knowledge from experience is appreciated and it becomes the basis for planning responses and services. Services are developed in collusion with the user, which ensures the services required, wanted and needed are received (Flaker et al., 2008, p. 19–27).

Among the major shifts brought about by the new paradigm of long-term care is the idea of a new way of funding care. The basis of the new paradigm of providing care moves the funding away from institutions, to the users. Therefore, direct personal payments become the norm. So, instead of going to a care institution, or any other service, the funding goes directly to the user. Personal³ payments mean that the user receives the exact amount of resources they need for comprehensive care. Thus, spending is more transparent and more efficient.

Direct payments

Direct payments represent a major shift of power from institutions and professionals to users. Traditionally, funds are allocated to institutions and professionals who provide users with care. The planning and provision of services are beyond the users’ control. Consequently, the lives of users are dictated too by service providers and institutions (Škerjanc, 2010, p. 15– 30).

With direct payments, funding is directly received by users and is totally at their disposal. Thus, the implementation, planning and the people planning the services are overseen by the users. The innovation of direct payments was conceived by the users, they fought for and demanded it, and finally some countries in Western Europe accepted their plea for it.

The beginnings of direct payments appeared in the nineteen sixties when Paul Hunt (1966) had a letter published in The Guardian about his experience with disability and the institution where he lived. A few years later he posted a new letter and asked other people with similar experiences to join him and fight together for the right to live in the community. Following this rallying cry, in 1975 a small group of people with physical disabilities founded the first association of users against segregation. In addition to defining the terms disability and physical impairment (Union of the Physically Impaired Against Segregation, 1975), it was one of their first projects to strive for funding that would enable them to live outside the institutions, no longer under the patronising arm of the institutional regime.

For the first time people got the means to access their current accounts in England. This money was for their own care, it came from the local authority and was given to a small group of people (about eight). There is not a lot of information about this project and its effects on the users, but we know that the users could move from smaller institutions to their own houses.

The successor to the IT project, was The Independent Living Fund, which provided the possibility of direct funding to a large number of Britons. The government then passed a law to introduce direct funding into the social care framework, allowing access to financing for most people who needed long-term care. The trend of providing direct payments to users is not only a British phenomenon, but is established in other countries as well. 

For Slovenia, the first attempts at direct funding were in the early nineteen nineties in the geographic region of Slovenian Istria (Škerjanc, 2004). In 2003, the experiment: ‘Individualised funding of personal care’ started (Flaker et al., 2007, 2011). The Slovene experiment has shown similar findings to foreign research (Stainton & Boyce, 2004; Flaker et. al., 2007) in that, direct funding has long-term economic efficiency, ensures quality and flexible services, and in particular, improves the quality of life for users.

Simultaneously with the introduction of direct payments the mind-set of the professionals has to change and new methods of social work need to be incorporated (a paradigm shift). A different way to pay for services does not necessarily mean a change in the social role and an improvement in the quality of life of the individual. It is important, how much control users gain over their lives through direct payments and how they can, with the help with others, tune their lives to their own pitch (Hasler, 2000). Direct payments are an effective tool for users to emancipate their daily lives. If direct payments are used together with the principles of users’ perspective and empowerment, this can help deinstitutionalisation which, in turn will return to the users the civil rights that were taken away from them while institutionalised.

Direct payments and the switch towards the community also raise a lot of questions regarding the costs of care and the assessment of them. There is sometimes an understanding among professionals and politicians that community care and direct payments are more expensive. To corroborate or refute such a statement a thorough economic report should probably be carried out for each locality, to compare costs. Regardless the issue of the size of cost, it could be stated that the switch towards the community makes the costs more effective because the person receives the services or cash that they need and the spending in the community makes more returns in kind. Institutional care provides the same package for all and some users receive services they do not need. 

Direct payments definitely change the relationship between users and professionals. They put the user in the position of the employer, with the professional becoming their employee. This also raises questions about administration and employment legislation. As described above, different countries regulate this very differently. Some are very administrative and require a lot of control over expenditure, some give much more autonomy to the user regarding payments. But the main question that needs to be addressed here is about the rights of the carers and professionals as employees. First of all, their salaries, which the English experience has shown are very low, causing under appreciation of care work and the fluctuation of care workers. Second, is the basic right of the worker to health care, days off and so on. Every country that is, or will be introducing direct payments should take this into consideration and find a good balance between the needs and rights of users and carers. 

The International Perspective

European countries are, in different ways and with different perspectives facing the challenges of demographic change, as an increasing share of the population are becoming, or will in the future become, dependent on long-term care. As a result, it is necessary to deal with the organisation of long-term care. Today, long-term care around the world is an important social issue that raises many new questions and challenges. Long-term care needs radical changes that will be sustainable and meet the needs of current and potential users. It has become a major issue of public importance, and not all European countries are taking the subject in the same way, or using a systematic approach. In Slovenia and most Central and Southern European countries their attitude has not yet been systematic, while most of the Northern and Western countries have been active in this way throughout the last twenty years (see Oesterle, 2011).

The following, especially in terms of direct payments and cash benefits show the basic features of the applicable long-term care in Austria, Germany, Great Britain, Luxembourg, Sweden and the Netherlands (see Flaker et al. 2011a). When the different institutional frameworks and policies were reviewed in these countries, it became evident that three of the five welfare systems derived from Esping–Andersen's typology are represented. Countries that are considered in this paper belong to the liberal, conservative– corporatist and social– democratic welfare regime (Kolarič, Črnak–Meglič & Vojnovič, 2002). The countries may, however, in terms of funding long-term care be divided into two groups. The first group of countries (Austria, Germany, Luxembourg and the United Kingdom) are characterised by a significant proportion of public funding, of which a large proportion is aimed at supporting and encouraging informal care. This is enabled in two ways: either as a cash benefit to the beneficiaries, who can choose whether to pay informal helpers or for other services (Austria, Germany, Luxembourg) or as a cash benefit for relatives to provide care for family members (Great Britain). The second group of countries, where Sweden and the Netherlands are placed, are also characterised by a significant proportion of public funding, but it is channelled through the creation of formal services for both home care and institutional care (Lundsgaard, 2005).

Table 1: Key characteristics of the organisation of long-term care and direct funding in selected European countries.

Country	Type of Long-term Care	Model (Insurance, System)	Provision of services	Expenditure control
Austria	Payment for care (Pflegegeld) covers both home care and institutional care (since 1993).	Federal and local budgets.	Direct payment	Control of the quality of care based on randomised sampling.
Great Britain	Direct Payments are used to employ personal assistance or travelling costs. Payments cannot be used for living costs or any other services (law exists since 1997).	The government authorises the local authorities to decide on the budgets for direct payments.	Direct payment	Administrative (total control over the expenditures).
Sweden	The responsibilities for long-term care lie on the local authorities that have to provide community and institutional care. The beneficiaries of LSS and LASS4 are people with disabilities between the age of 18 and 65 (at the time when they apply for the payment).	Local authorities	Direct payment	Administrative
Netherlands	Community and residential care for the elderly and people with disabilities is covered by the social insurance. The payment is aimed at household help, personal hygiene, health care, companionships, organisation of care and respite care in the maximum amount of twice a week for 24 hours.	Social insurance	Direct payments, services in kind or a combination of both.	Administrative (for the first 2500 € no proof needed).
Germany	Part of the social insurance system, it covers the community and institutional care.	Compulsory social insurance.	Direct payments, services in kind or a combination of both.	Control on the quality of services; no control on the expenditure.
Luxemburg	Long-term care insurance (since 1998) as part of the social insurance system. Community and institutional care is covered by it.	45 % national budget, 55 % long-term care insurance payments and taxes on the electricity.	Direct payments, services in kind or a combination of both.	Administrative

Source: Pijl & Lundsgaard in Flaker et al., 2011.

There are substantial differences in the introduction of direct funding and cash benefits with regard to the long-term care systems in each country; this is dependent on the social security system of the country and its institutional framework. For example, in some countries there are several types of cash benefits (several different schemes of payments for care in the UK⁵) and in some only one (for example Pflegegeld in Austria). 

The eligibility of certain cash benefits is not age-related (e.g. prestation en espèces in Luxembourg), but in some cases, such as LSS or LASS in Sweden, there is a limit of 65 years. In most cases the amount of the benefit is conditional on the beneficiary's income and wealth, while the amount of cash benefit in some other countries is divided into different bands (e.g. Austria and Germany⁶).

There are different rules and practices regarding the use of cash payments. Some countries require that the parameters of spending specified in the personal plans of users are not breached, while in other countries there are no restrictions on expenditure at all. The system in Austria has been designed so that users are free to spend their payments as they wish. Similar arrangements exist in Germany, where benefit recipients can spend freely, also family members can be a part of the provision for care. Both Germany and Austria are experiencing a large grey market with the emergence of migrant labour, because it is financially more accessible and more attractive to employ helpers from this area in comparison with social services and family care (Hammer & Oesterle, 2003; Da Roit & Le Bihan, 2010). In contrast, in the UK (Direct Payments), payments for care are specified with a personal plan, the local authority retain full control over spending, invoices and certificates are checked. Administration and accounting can be performed by the users themselves or they can hire an accountant as a part of the personal package, but this implies additional costs.

Direct payments differ in various respects, as well as operating in different institutional contexts. This means that progress or development in this particular area would not necessarily be as effective when introduced elsewhere. The aim is not therefore to show what constitutes good, or the best practice in Europe, but to show different arrangements. Years of experience, both positive and negative, of a range of countries can be a useful and effective tool to help restructure long-term care in Slovenia, especially in the implementation of personalised and direct payments.

Regulation of long-term care in Slovenia

Long-term care in Slovenia is provided through different pillars of social security; as an additional pillar of long-term care in its own right has yet to be established. A law that would regulate the provision of a comprehensive and long-term care has been awaited for a long time, proposals for the law have been made – but there is no consensus, or change in this field. Currently, long-term care is covered by several uncoordinated laws, namely the Pension and Disability Insurance Act, Health Care and Health Insurance Act, Parental Security and Family Benefits Act, Social Security Act, the Social Security Benefits Act and the Social Care for Physically and Mentally Disabled People Act. This means that people receive services and benefits for long-term care in ways that are governed by subsystem of social care provision. Most of the identified separate laws have recently reformed, resulting in a change in the organisation and provision of long-term care.

A fundamental feature of Slovenian legislation is that most organised long-term care takes place in institutions. The amount of users receiving long-term care in institutions is three times the number of users receiving care in their homes. According to the Statistical Office of the Republic of Slovenia (SI–STAT) in 2011, there were 17,386 residents in Homes for the Elderly, while help at home, was received in the same period by 6,624 people, according to the Institute of Social Care (Nagode, Jakob Krejan & Smolej, 2012).

In Slovenia, long-term care is provided in a variety of ways, as institutional care (living in an institution), as community-based care at home, in intermediate structures (group homes) and with cash benefits. In addition to homes for the elderly, special social care institutions and training centres for people with intellectual disabilities provide institutional care. The intermediary structures provide care through training centres for people with intellectual disabilities (daily visitors), day centres and group homes. Community long-term care is provided by home care services, centres and other institutions in the form of personal help and assistance at home, family helpers, telecare and personal assistance. There is only one cash benefit available in Slovenia – the care and assistance allowance. In contrast to other services, the benefit is paid directly to the user. This benefit is regulated under several laws, but one person can only receive it under one law (Flaker, Kresal, & Nagode, 2011).

Most users receive an allowance under the Pension and Disability Insurance Law. According to the Institute for Pension and Disability Insurance in December 2011, there were 31,238 recipients of the care and assistance allowance, of which 498 received the highest amount of benefit (414.50 Euros), 11,340 a medium amount (290,15 Euros) and 19,400 a lower amount (145,08 Euros). Allowances can be received by people who live at home and do not receive any formal care, as well as people who are in institutional care. From existing data, it cannot be determined how many recipients get the allowance, and how many get the allowance and other services. The data of the Institute for Pension and Disability Insurance shows that the allowance is relatively low (for example, it cannot provide more than 30 hours of care per week) and is not sufficient to maintain an independent life in the community. This, and the fact that Slovenia has not developed enough of various forms of care, especially care in the community, forces people into institutions, because their network is much more widespread and accessible to potential users.

Community-based care in Slovenia started to be developed in the nineties. An important role in this area is held by the public service called the help at home, as well some new non-institutional structures, such as day care centres, group homes, sheltered housing and telecare have also been developed. Although all national social security programs and the national aging strategies emphasise the importance of community-based care and promote its development, it seems that this is stuck at the declarative level. Particularly in this respect, Slovenia lags behind with regard to development and diffusion of information and communication technologies (such as telecare). Also help at home, as has been already mentioned, is evolving much too slowly, it reaches fewer than 7000 users, which means that Slovenia is still 30 percent short of the ambitious national target, of reaching 10,000 users by the end of 2010.

It can be estimated that over half of people (56%), who are included in the long-term care system, are living in the community (Flaker et al., 2011a, p. 248–250). Many are in institutional care (39%), only a small number (5%) are in the intermediate structures. Of those living at home, most do not receive services, but only the allowance for care and assistance. Another major group living at home are users that receive help at home. The Slovene system, on the one hand encourages users to use informal resources, and on the other hand it exhausts informal carers because it has a bimodal distribution of services and payments. The small amount of services in the community encourages informal care but when this is not enough it overburdens the relatives and then the only option is an institution. It can be reasonably argued that funding for community care is sufficient for users with marginal needs, but forces users, who need ‘medium to intensive care’, into institutions.

Slovenia, has, for a long time, with national programs and strategies, encouraged the process of deinstitutionalisation and direct payments. This was the reason that, in 2003 the Institute of the Social Care and the Faculty of Social Work at the University of Ljubljana carried out an experimental project called ‘Individualised funding of social care services’ (Flaker et al., 2007, 2011). In the following discussion, the experience of the project is shared and used to articulate a vision of what is hoped long-term care in Slovenia can be. 

The experiences of resettling are the main topics shared in the article because, the authors wanted to focus on the results that are helpful when making suggestions for legislation that will encourage deinstitutionalisation. The whole pilot project encompassed more than just the resettling process and has also resulted in the development of the method of personal planning and provision of care, developed possible organisational models and procedures of a long-term care system and created new knowledge on the implementation of innovations. 

From institutions to the community

The experiment had two types of resettlement, i.e. resettlement to a private home or to a halfway house. Four users moved into a private home and two into the halfway house as soon as it was established.⁷ 

When the personal plans were analysed for people living in institutions, it became evident that there was no significant correlation between the intensity of care needed and the process of resettlement. It could even be said that some users who moved immediately to their own independent housing, needed significantly more daily assistance than those who had moved into the halfway house. The users with better social networks tended to have more success in their resettlement.

The users in institutions, who have maintained contact with loved ones and friends, were resettled more quickly with the help of their support network. Practical help from friends was important and this also provided a guarantee for the landlord. Friends have played an important role in providing at least some care immediately following a move. Usually they performed most of the services of the personal package of care while waiting for the direct payment to arrive. Most important was the ‘doing of little things’ that aided the moving process. For example, they supplied cooking utensils or arranged an appointment with a local doctor.

During the experiment, it was revealed that users who have more fragile social networks, found it harder to move. As with society at large there is no special housing scheme for returnees from institutions in Slovenia. What there is in the private market is all that is available, and even if they had the support it seems virtually impossible to find somewhere adequate, as the user generally lived in remote institutions. In addition, the need for a transitional period, for re-learning some of the skills for living independently that have been forgotten in institutions, and re-discover how you actually live a life free from the shackles of an institution. After a long life in an institution, people often forget how to live in the home environment. Institutions create a passive mind-set in the users, and deny access to experiences and progression in life. For all these reasons, during the experiment a halfway house was designed and implemented.

The halfway house was established for people who move from institutions into the community. The original idea was that people spend half a year there. This time is used to learn everyday skills and to intensively plan independent living. After six months it is expected that a move into independent housing will occur.

Thus, in early 2009 the first two people moved into a halfway house. Similar to other participants in the experiment, it was observed that their lives had changed; they had become much more active and revived contacts with friends and relatives. Since the project was completed at the end of the year, new people have not moved to the halfway house. The first three new residents came to the halfway house only at the end of the Walk-out (Rafaelič, Flaker, 2012). They participated in the march around Slovenia ending in Ljubljana where they decided to stay, but had nowhere to live. They are currently living in the halfway house with the help of an NGO and are at least temporarily resident there.

Benefits of direct payments in the resettlement process

Direct payments in resettlement have emerged internationally as an effective aid. Experience of direct payments in the experiment showed that direct funding allows users to move from institutions into the community, to have them re-establish their lives in a home environment and, most importantly, start to realise their personal ambitions and goals (Flaker et al., 2011).

Resettlements are difficult to plan. Even if the user plans every detail of the move from an institution to the community, the change can cause many unpredictable twists and turns. It is also difficult to plan costs of a personal package, some people do not need as much help to learn basic skills for everyday living as originally planned, but in some cases people need a lot more help. In such cases, direct payments were used in a more flexible manner. For example, a user used money initially planned for help to clean her house, for trips to see his daughter. It is often the case that resettlement has additional, unplanned costs of living associated with home furnishings. Sometimes users can get the free assistance of volunteers, and with the money saved, buy equipment for the house.

Unpredictable life situations are dealt with a lot more flexibly and efficiently with direct payments. Users are allowed more manoeuvrability to respond to their needs and the resettlement process is likely to be less stressful.

One of the main advantages of direct payments is that the user receives the exact services they need from the providers they choose. This becomes more important when resettling because the institutional regime puts user’s fate in the hands of professionals and institutions, thus, users become accustomed to accept services offered by the institution, because there are no other options. The inmates of an institution do not just forget everyday skills but also forget what were their wishes and desires. Direct payments can compensate this.

A personal plan lies at the heart of each resettlement in the community devised on new foundations that breaks with the old structures. The user assumes power and together with a care manager plans their own care and decides what the desired responses of the plan are. Therefore, it becomes even more important that care managers understand the user’s perspective and respect their wishes, with added attention being paid to the issue of the transfer of power from professionals to users. 

The experiment has proved that this has mostly been successful. The method of personal planning and provision of care, which has been used, has shown it is possible for people to take control of the planning and implementation of a plan even when they have moved from institutions. It has also been shown in the experiment that care managers should be more imaginative and creative when planning personal plans with long-term inmates of institutions. Just talking to the person about their lives and goals is not enough, the user and the care manager have to try things out, carry out small experiments and maybe, sometimes also make visits outside the institution to see how a person behaves in an everyday, out-of institution situation. 

The project has shown that human nature allows users to be re-activated in everyday life, to seek paid work, and to re-acquire the role of friends, mothers and brothers. People that resettled have been reunited with their children after a very long time and started regularly seeing their siblings whom they very rarely saw in the institution. 

Experimentation in the field of direct and personal payments has shown that with this system the process of deinstitutionalisation can be accelerated and enable users to resettle on their own in a relatively short time and return to their lives. It also allows the users to take control of their lives, become independent from professionals and become active again in their lives as everyday citizens are. This article and the draft law on long-term care define direct payments as one of the ways to facilitate deinstitutionalisation, enabling users to become emancipated and take control of their lives.

Obstacles during the experiment

Despite the unequivocal success, the experiment also had to overcome a number of barriers. These were not associated with the idea of direct payments or by the method that was used, but rather the nature of the experiment and the limitations set by organisations that participated in the experiment.

The experiment was commissioned for a five year period. The project was prolonged each year by the Ministry of Social Affairs which made the users feel very uneasy about their future. Those who decided to resettle were risking a lot because the future beyond the experiment was uncertain. It was agreed with the institutions in which the participants of the project came from that they would be re-admitted as a priority if the project was halted, but it was still a risk for the participants to take.

There was uncertainty surrounding the money transfer. Municipalities provide the money for personal service packages with at least a two-month delay. While institutions can overcome this because care is given every month for up to six hundred people, a person does not have the means to live by this method. To spend two months without any income when a person is moving on their own is very stressful. Thus, users have been forced to borrow money from friends and relatives so they can get through this period. For those who were living in a halfway house, money was lent for this two month period by the NGO Altra.

The delay in payments was extremely inefficient for everyone concerned. When the users needed the most help and support and furniture and domestic appliances, they were not able to fully afford it. In these cases, they had to ‘find their own way’. They succeeded on two counts, friends and relatives provided support and help and the project colleagues put a lot of effort in organising care in their own networks and providing furniture and domestic appliances from themselves and their friends and family.

The implementation and payment of a personal package should therefore be initiated while the user is still resident in an institution so that they have initial source of funding to start the process of preparing a home.

Another obstacle that was observed in the experiment and in the provision of care for people who had moved into the halfway house was that payments were, on occasion, not high enough to meet the needs of the users. In the experiment some municipalities did not pay the full amount of the direct payments. In such cases, users could not achieve all their goals as set in the personal plan, which proved to be ineffective in the long run. Less assistance is required and more independence gained if the user is fully invested in from the outset.

In addition to the hurdles mentioned in previous paragraphs, the project found itself caught in a similar trap as the majority of non-governmental organisations. Group homes still have not managed to become intermediate homes. The users who have moved into the homes are still there. The main reason that people have not moved out is the lack of affordable housing. Anyone who moves from group a home, has to find somewhere to live in the private sector. The situation is much less secure than staying in a group home as it is hard to gain the trust of landlords and to overcome the stigma attached to people living in institutions. If the users received money in advance (a few months) for housing this could possibly pave the way for more trust from prospective landlords. 

Users become ‘institutionalised’ in the group homes, thus they lose the will and forget how to dream to want to live independently. At the same time the professionals lose the enthusiasm and drive to apply pressure to insure the implementation of the personal plan, so both the users and professionals stay working and living in the group home.

Another thing that had brought a halt to the resettlement process were events that happened at the end of the project. When the project finished, the planning and coordination of the personal plans for the users participating in the project was taken over by the care managers employed in the centres for social work and most of the care was provided by the Agency IN, a non-profit, non-government organisation. Some care managers thought that direct payments were not a stable scheme, so they did not want to risk resettling the users into independent living. Resettling to their own homes brings higher costs at first and also requires more engagement between the professionals, helpers and the users, but sometimes social workers forget that the chance for independent living is a great opportunity to finally live the lives that they have aspired to.

The obstacles that were faced during the experiment reveal a lot about how the draft long-term care legislation should be changed and what proposals need to be made for a law that will encourage deinstitutionalisation, and will not be just another paper that will satisfy international and European standards without changing anything in practice.

Proposals for a law to encourage deinstitutionalisation

The latest draft of the long-term care and long-term care insurance law, which was aired at a public hearing, has triggered many discussions by experts in various fields. The discussions included health professionals, especially nurses and home carers, professionals who work in homes for the elderly and special care homes for people with disabilities, also the insurance industry and economists. The main disadvantage of the debate on long-term care was the low participation of users. In the future it would be beneficial to organise a broad public debate that involves people who need long-term care. To this end, it may be necessary to organise a number of public debates and assemblies, prepare brochures and put together websites in such a way that different groups will be able to understand.

We believe that the long-term care law should harness a right to life in the community as its basic principle. The fundamental right of each potential beneficiary of long-term care should be a right to live independently at home. This right obliges authorities to ensure conditions, services and resources that will result in long-term care in the community, so everyone have a real choice between services in institutions and in the community.

The Act, which will encourage the development of community-based care, should also make it compulsory that a specified proportion of the institutional residents are resettled in the community. Until now, most of the goals set by the national social care plan have not been met. Even though help at home is the most widespread service in the community, it still has not reached the figures predicted in the national social care plan, by end of 2010 should have reached 10,000 people. In reality it reached little more than half of this figure.

However, in the same period the goal for the number of places in homes for the elderly was reached. The National social care plan has not been implemented consistently and the process of deinstitutionalisation has not been carried out. The National Social Care plan provides only guidelines and strategies to work towards a greater control for users. Declarative guidelines are not enough, because they are rarely implemented in practice. To ensure that the guidelines will be followed, formal conditions have to be incorporated into the law. It is therefore necessary to consider how to convert the institutional capacities to community-based services.

The proposed long-term care law ensures funding for the adaptation of houses for the use of people with disabilities. The possibilities to adapt housing may, in a lot of cases, prevent or delay institutionalisation. In this part the law alludes to the process of deinstitutionalisation, but there is another aspect that the law does not address: the move from institutions into the community. 

In the experiment, it was observed that people who live in institutions, despite support, cannot find housing. If the desired outcome of the law is to transform the institutional services to community based ones, the whole social housing policy has to be regulated. Housing can be provided through the establishment of specific non-profit housing cooperatives, or within existing local housing funds to establish a quota system and a specialised service for vulnerable groups. There should be special forms of transitional housing developed which provide a key step in the move from an institution to independent living. Housing with support or sheltered housing might be a solution as well but when developing it should be considered what are the best solutions either for the users to have separate landlords and care providers or having both housing and care delivered from the same provider. 

It is also necessary to consider how to compensate people who, due to a lack of care at home for so many years, were forced to live in institutions. It is necessary for the law to provide compensation as a result of the consequences of institutional living, or establish a special trust fund for long-term residents of care institutions. The compensation could ensure a good chance for resettlement for residents of institutions, which could in turn be used for start-up costs incurred in the process and as an investment in their future.

The existing draft law already provides for direct payments as one of the ways of financing care. A small amount of direct payments can supplement the household budget. An insufficient payment will undoubtedly once again burden the informal helpers, who are mostly women, and it would cause people who opt for direct payments to have fewer and poorer services. Ideally the direct payment should match the other ways of funding because of the positive effects on the user’s control and power.

As shown in the experiment, direct payments are an effective tool in the deinstitutionalisation of long-term residents of institutions because it ensures a flexible way of using the funding. When resettling, flexibility and quick responses are a key factor for quality resettlement. The type of funding in itself assures that users take on an active role, enabling a quicker recovery from the effects of institutionalisation.

If, after the resettlement process the users stay lonely in their homes, this could cost the government substantially. Services of inclusion may at first represent an extra cost, but usually this cost pays itself back because the users meet new friends who can also provide some of the care. Inclusive services do not only improve the quality of life, but in the long term decrease the costs of care. Services of inclusion should therefore be part of the package of services that the users are entitled to.

It is to be expected that some professionals will deliberate regarding the introduction of direct payments, especially for people living the institutions. The experiment of direct payments in Slovenia has shown that users spent their money for services planned. In some instances however, they used money for other things. In these cases, the law should suggest the use of, a method of risk analysis. 

Even if an excellent law is written, and enough funding and quality care is provided, the implementation of the law needs to be monitored and challenged with new pilot projects. The law should be integrated gradually, it should be tested on different groups (elderly, children, people with HIV and cancer), and different planning methods and ways of payments should be experimented.

Conclusions

The purpose of the experiment of direct funding was, apart from testing the method of personal planning and the implementation of direct payments, a preparation of proposals for a long-term system. In this part the experiment succeeded. The bases for the establishment of a long-term care system are prepared, the procedure for the implementation of the system is known. It is also known how to establish a system of direct payments that will enable quick resettlements and a quality life for those living in the community.

Foreign experiences informed the evaluation of the experiences of the Slovene pilot project. All the international trends show that the development of community services and the reduction of institutional capacities are a necessity. Foreign experiences (especially British) have shown that direct payments are one of the key pillars of community care. They enable the users to hire exactly the services they need, and also those that do not currently exist in the structure. They can plan and create the services on their own.

Long-term care in Slovenia is regulated under different laws. It is a complex and non-transparent system. The existing long-term care system does not enable people to stay at home when they need care. Flaker et al. (2011) state that a person who needs more than two or three hours of support a day and some care management is forced to go into institutional care. Slovenia has ineffective and under-developed community care. Care at home exists, but accessibility is dependent on location. (Nagode, Jakob Krejan & Smolej, 2012). Considering the under-development of community services, direct payments could be one of the tools to support the development of existing services and the creation of new ones. Slovenia lags behind other European countries in the process of deinstitutionalisation but direct payments can accelerate resettlement to the community.

The most important thing in the implementation of the long-term care and insurance law and deinstitutionalisation is that work starts on it as soon as possible. The discussions have taken place, the experiences have been had and the knowledge has been acquired, it is now time for Slovenia to use these assets and take long-term care and deinstitutionalisation to the next level.

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