Personal budget and personalised support

The last 30 years have been characterised by striving towards a more personal support for persons with disabilities. The primary example of this is personal assistance. All Nordic countries have today some kind of a system for personal assistance where the individual has an extensive influence on the form of support. However, the extent of the system and the definition of who are entitled to the support vary between the countries. Finland implemented personal assistance in 1987 through the Act on Disability Services and Assistance and personal assistance became a subjective right in 2009. Sweden implemented the service as a right in 1994, Denmark in 1999, followed by Norway in 2000 and Iceland in 2018. The requirement of personal assistance has been driven by the disability movement, especially by organisations close to the international Independent Living movement. At the same time the Nordic welfare states have introduced an increasing number of market solutions for social services.[1]

Personal budgeting (PB) is a broad concept with no uniform definition. The concept spans a lot more than money or a payment method the individual has control over themselves. These are often called Direct payments. The concept of personal budgeting may vary in meaning in different countries. The Finnish project is based on the notion that a personal budget is a way of providing assistance, support and efforts, focusing on the person themselves when planning, choosing and implementing these in a comprehensive manner. When the project started in Finland in 2020, it was observed that there is no established definition of a personal budget.

A personal budget is used in health and social services in several countries. England, the Netherlands, Belgium and Germany are some of the examples in Europe. Also, the United States, Canada and Australia are countries with personal budgeting. In England and the Netherlands personal budgeting has been in use since the 1990’s as a user’s right in the legislation. A personal budget is a sum of money granted to the individual based on an assessment of the individual’s service needs and a calculation of a budget for this purpose. The individual can use the budget to buy necessary services. A personal budget may also be called an individual budget, which may include other benefits received by the individual. For example, Scotland uses the term Self Directed Support, meaning an operations model resembling a personal or individual budget. In England the personal budget in healthcare is called a Health budget. Direct payment refers to a personal budget paid to an account to be used by the individual themselves. An Individual Service Fund is also in use in England. In this case the personal budget funds are paid to a service provider. The individual can then agree on the arrangement of the services with the provider in a flexible manner. (Liukko 2016, THL).

In Australia, England, and Scotland more recent legislation for organising efforts and support for persons with disabilities, and the disability policy, have been based on principles on individualisation and self-determination. The new legislation has shifted focus from determining a person’s right to pre-established service based on a certain disability to the individual needs based on the situation for the person with disabilities. In other words, the desired results from the efforts are defined by the person themselves (with or without other interested parties) as well as the methods for attaining them. Consequently, the legislation does not include information on who are entitled to services and support. It includes instead underlying principles on personal choice and control, participation, respect and dignity; joint production, referring to professionals and participants required to work together to identify the path to desired results. Furthermore, innovation, referring to that support is not only acquired by buying it but also through natural (non-monetary) support forms and general infrastructure, such as information, development of capacity and competence individually and in families, web services and commitment to the community. The development on the market is also included, taking into account the redesign of resources invested in the elderly, traditional models for service and investments in service providers, especially within individualisation of services. The participants and professionals monitor, report and assess the implementation. The legislation in these countries establishes assessment and planning processes, in which the person with the disability is at the centre of the process, and formal action plans are developed (e.g., trying out self-assessment). The legislation transfers the responsibility for funding to the participant, if competent; to a party nominated by the participant, or with the participant’s consent; or to the local authority, which disburses the funding (Pike, O’Nolan & Farragher, 2016 p. 3–4).

Different elements of freedom of choice have been tried out in the Nordic countries and included in healthcare and social services in the form of systems of choice and increased opportunities for users to choose the provider. In the survey at hand we have focused on efforts and support for an independent life for persons with disabilities. Which solutions are there for increased flexibility and freedom of choice when it comes to efforts and support? Which possibilities and risks do these involve?

Different kinds of reforms within the general social services sector have been carried out with the motivation that it increases the freedom of choice for the users. All the Nordic countries, except for Iceland, have adopted the possibility of customer choice within homecare. Other common terms are freedom of choice reform, a money, cheque, or voucher system. The opportunity for customer choice is a part of a broader trend where market-oriented systems are introduced on the public sector - this is called New Public Management (NPM). The development towards New Public Management is described as a reaction against the formerly dominant method of governing with a clear division between public and private, and with the aim of creating an impartial administration. Legal certainty and just procedures were in focus for the governance. The criticism towards the system was that it was not flexible and lead to decreased efficiency and productivity, as well as a lack of respect for the users’ wishes. The principles of customer choice models are, among other things, to make the activity more responsive to users and that the providers act as companies and compete over the users’ needs. The citizen’s active choice becomes the foundation for the organisation of public operations.

In principle, all the Nordic countries have adopted market inspired solutions on the social services sector, but the degree of market orientation varies according to the size and structure of the profit-making sector, as well as the role of the non-profit sector.

New Public Management has been largely debated during the last few years, maybe mostly in Sweden where the adoption of market solutions for welfare services has been more widespread based on New Public Management.

The public procurement of homecare services in the Nordic countries is most commonly used in Sweden and Finland. These countries also chose not to make any exceptions for welfare services in the implementation of the EU public procurement legislation. The use of public procurement has generally been more uncommon in Denmark and Norway where politicians have been more sceptical of this solution. Customer choice models are used the least in Norway. The largest non-profit sector is in Finland. One important reason for this is the funding model from the country’s gaming company, Veikkaus (formerly Finland’s Slot Machine Association), which has exclusive rights to gambling games in Finland. The surplus, about EUR 1 billion annually, is used, among other things, for supporting the disability movement and other non-profit organisations running several welfare services.

The Nordic welfare model may be described and defined in different manners. In the report Viden som virker i praksis on strengthened Nordic cooperation on the social sector, the former Icelandic Minister of Social Affairs and Social Security, Árni Páll Árnason, describes the Icelandic welfare model as follows:

A solid offering of social efforts, a universal right to tax-funded welfare offers, a strong tripartite cooperation, a key role for municipalities for providing welfare services and an active civil society.

The responsibility and execution of a large part of the Nordic welfare lies within the municipalities. This decentralised organisation of welfare is characteristic for the Nordic countries. However, the number of municipalities varies significantly among the countries. Norway has the largest number of municipalities, 422.  Next is Finland (295), Sweden (290), Denmark (98) and Iceland (79). The number and size of the municipalities means that there are differences in the welfare offering between the countries, mainly between large city areas and smaller municipalities. Averaging provisions aim at reducing those differences. Personal assistance in Sweden is a shared responsibility between the government and the municipalities, whereas it in the rest of the Nordic countries is the responsibility of the municipalities. In international comparable studies the social costs in total are higher for the Nordic countries than the average for OECD countries (Organisation for Economic Co-operation and Development). The highest cost for economic support and social services for persons with disabilities as a part of the gross domestic product (GDP) is 6.1 per cent (2014) in Iceland. Next is Denmark with 4.1%, Norway 4.0%, Sweden 3.5%, and Finland 3.4%. The personal assistance effort is more comprehensive in Sweden than in other Nordic countries. The age structure has an impact on the countries’ social costs. The population of Iceland is younger than in the other Nordic countries and has more participants on the job market (The Swedish Agency for Health and Care Services Analysis, 2020).

Systems of choice and individualised support, such as personal budgeting and the consequences of this for the Nordic welfare model, have been largely discussed, both politically and academically. The discussion has, among other things, revolved around if the systems of choice are cost-driving. The Swedish Welfare Commission has highlighted that the large number of private service providers leads to an increasing need for follow-up and control, which again causes increasing costs for the municipalities and the public sector.  Systems of choice may make it harder for the municipalities to plan, since it is not known how many individuals may choose a certain alternative, such as a school. They may also be experiencing overcapacity since the municipality according to key legislation regulating the compulsory education for comprehensive school or the obligation to provide healthcare and social services has the utmost responsibility in the matter.  Therefore, the Swedish Welfare Commission proposes an assessment of the costs for systems of choice.

Also individualised systems for disabilities, such as personal assistance, and the relation to the Nordic welfare model have been discussed. Personal assistance as a form of support is heavily connected to the Independent Living movement originating from the United States. One of the basic principles of the Independent Living ideology is that the individuals themselves are the best experts on their needs. Cash support is seen as an important principle in order for the individual to gain power over the support and choose the service provider or product themselves. Representatives for Independent Living have recommended that the principle of cash support be extended to support in the form of assistive equipment  and interpreter services.  However, in an article (2018) Brennan, Traustadottir, Rice and Anderberg state that “Being Number One is the Biggest Obstacle” the focus of the Independent Living ideology on the individual as a customer in a market can be understood to derive from the US having relatively undeveloped welfare services. They think that the principle of cash support became problematic when it was introduced in other countries with more developed welfare services, such as the Nordic countries, especially the marketization and consumerisation of an individual. The extent of the marketization of personal assistance varies between the countries and over time In the article Personal assistance in a Scandinavian context: similarities, differences and developmental traits. Askheim, Bengtsson and Bjelke (2014) point out that for example Sweden has regulated the system for personal assistance further and gone “from consumerism to re-regulation”, motivated, among other things, by the fact that the costs have been higher than anticipated.

The legal situation has also been discussed, especially in context with how social rights are judged by the courts. Andreas Pettersson (2015), who has compared Danish, Norwegian and Swedish legislation in Out and about in the welfare state: the right to transport in everyday life for people with disabilities in Swedish, Danish and Norwegian law, states that the courts are influenced by economic arguments in their judgements. This weakens the individual’s social rights. Pettersson also found that legal protection varies in strength in the Nordic countries.

Another topic of discussion is how individualised support efforts are limited and are proportionally related to other efforts within the welfare policy, such as healthcare.  A study of the use of personal assistance in Sweden; Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study shows that a decreasing amount of assistance is used for activities aimed at an active life, and that efforts of a more healthcare nature are increasing instead (Von Granitz, Sonnander, Reine and Winblad (2020). According to researchers, personal assistance in Sweden is developing towards an unloading of healthcare rather than being a support form for independent living and inclusion in the community in accordance with Article 19.

A fundamental idea with New Public Management and customer choice systems is that individuals have the capacity to make informed decisions. But they also need time and stamina to understand and assess the information on different alternatives the individual faces when making choices as a customer. For persons with a chronic illness and disabilities leading to reduced decision-making abilities this may pose a challenge.  In the overview Valfrihetssystem inom primärvården och personer med intellektuell funktionsnedsättning – en kunskapsöversikt  (“Systems of choice within primary healthcare and persons with intellectual disabilities”) by Urbas, Mineur, Arvidsson and Tideman (2014) the authors draw the conclusion that the area is unexplored. In order to make choices persons with disabilities need both individualised and available information to support the decision-making process. Formally the development strengthens people’s influence and power over their own life but when the individual needs and wishes meet prevailing norms, expectations and structures it will lead to difficulties (p. 30). The authors state, among other things, that research is needed on how persons with intellectual disabilities comprehend, view and act within systems of choice and how this affects how they receive adequate healthcare.

Both the Nordic and the international view is that the Nordic countries have a more comprehensive welfare policy than other countries; and that the Nordic welfare model differs from other methods for the welfare organisation.  This is generally established in comparable research. Concerning disability policy, the Nordic countries were in good time closing institutions for persons with disabilities and establishing local support efforts, such as group homes. However, for example Brennan & Traustadóttir (2020) have stated that the self-image of being world leaders in support for persons with disabilities may in itself be an obstacle for implementing the rights of the UN Convention on the Rights of Persons with Disabilities and to conceal the challenges facing the Nordic welfare states. The authors state that research shows a gap between the political objectives and the reality persons with disabilities experience. Individual support has been, and according to the authors, still is characterised by paternalism and an unbalance in the relationship between the individual and personnel, which prevents the possibility for independent living for persons with disabilities. The support needs to be more flexible and based on the individual’s needs. The support according to Article 19 is to be based on that everyone, irrespective of disability, have the possibility to live included and participating in the community in full.

In Finland the legislation concerning service and support for persons with disabilities will be reformed to increase the individual’s independence and control over support and service and for meeting the personal needs better. The main acts are the Act on Disability Services and Assistance and the Act on Special Care for People with Intellectual Disabilities. Efforts to combine these two special acts and replacing them with new legislation has been ongoing during several terms of government.  In the government programme for the current Prime Minister, Sanna Marin, a goal was set that individual needs for persons with disabilities are to be taken into account better in future.  The aim is that a government proposal will be submitted to the parliament during spring 2022. The act is proposed to enter into force on 1 January 2023.

Studies have been launched for examining if a personal budget could be an alternative method for organising support for persons with disabilities. In a pilot project during 2020–2021 the Finnish Ministry of Social Affairs and Health granted funding for nine regional projects within personal budgeting. The objective of the project is to strengthen the self-determination, inclusion and personal choice for persons with disabilities in the planning and implementation process, so that help, and support are available in a flexible manner in different situations and according to personal needs.  The purpose is to get information on changes needed in the legislation and to develop principles and methods for personal budgeting as an alternative when organising services and efforts.  In addition, the strengths and weaknesses in personal budgeting are to be investigated, tried out and compared to other solutions. During the project period a final report is drawn up based on the national and regional work. The report will, where applicable’, be drawn up as a government proposition. The final report is a proposition on how personal budgets should be introduced in Finnish legislation. The final report will be submitted to the Minister of Family Affairs and Social Services at the end of 2021.

The starting point has been that personal budgeting is planned to be introduced in the Finnish service system as an approach, a method for organising services individually and as a concrete method for organising services.  A personal budget refers to the funds the person receives for personal use, to manage themselves or to be managed by someone else, in order to arrange individual support and service. It will be voluntary to choose a personal budget in Finland and the system is planned to be used in parallel with the current support and services.

[1] Askheim, O.P., Bengtsson, H. and Bjelke, B.R., 2014. Personal assistance in a Scandinavian context: similarities, differences and developmental traits. Scandinavian Journal of Disability Research, 16(S1), pp.3–18