Support to individuals with comprehensive disabilities: Ideas in the Swedish Disability Act

The purpose of this study was to determine and describe the ideas, that is, a mental construction of perceived reality and values, which are expressed in the Swedish Disability Act and its Government Bill. By means of text analysis, four concepts of reality and values have been identi ﬁ ed: (1) Citizenship and justice, (2) The collective and integration, (3) The individual and autonomy, and (4) Decentralization and power shifts. The study also shows that social rights and social citizenship have been strengthened via legislation for individuals with comprehensive disabilities. It is also demonstrated that there is considerable room in the legislation for con ﬂ icts between the two concepts and values of collective/integration and the individual/autonomy. It can also be observed that there is a considerable risk that citizens are not treated in a similar manner as regards the interpretation and application of the Disability Act, which may lead to lack of legal security.


Introduction
People with comprehensive disabilities, irrespective of what type, have nearly always been subjected to political legislation dictating the content of care and support interventions (Goodwin 1997;Förhammar and Nelson 2004). The laws, it may be argued, reveal, although not always in a conscious way, the fundamental ideas expressed in the text of the legislation. In this paper, we investigate the ideas in the Swedish Disability Act with an aim to unpack them and also make them conscious and visible. The term idea is defined here as a mental construction of perceived reality and values (Bergström and Boréus 2012). In the aftermath of the deinstitutionalization process in the Western world, the Swedish Disability Act (SFS 1993:387) was passed in 1994. Compared to the other Nordic countries, which also made changes in legislation in the area of deinstitutionalization regarding service provision to people with disability, the Swedish Disability Act excelled by taking a specific route. The law was put on the top on the Swedish general social legislation and was situated as an unconditional law of rights (Tøssebro et al. 2012). This new approach was supposed to give people under the age of 65 years who have complex and comprehensive disabilities the right to receive long-term support and to improve their living conditions in order to be normalized on equal terms and in a non-discriminatory way (Lewin 1998;Erlandsson 2014). Nevertheless, up to the present the ideas in the Swedish Disability Act have still not been thoroughly scrutinized in Sweden and internationally in accordance with our premise that laws reveal fundamental ideas, but not always in a conscious way. Investigating the ideas of Swedish Disability Act may lead to an exposure of associations between norms, assumptions, and expectations with regard to aspects of social inclusion in society for people

Method
This study is a case study (Yin 2013). The case under investigation is the Government Bill 1992/ 93:159 -Support and Service for Persons with Certain Functional Impairments. The government submitted the Bill to Parliament, which determined that the Act (SFS 1993:387) would come into force on 1 January 1994. The Bill includes proposed legislation, assessments, and reasons why the law should be implemented, as well as summaries of major studies that led to the initiation of the Bill. We have chosen to limit the study to the Bill itself, as it is here ideas and values are expressed that form the basis of the decision to implement the legislation. We have excluded studies and consultation responses included in the Bill, or information from closely related sources that may have exerted influence on it. We have also excluded discussions by various actors in different media at the advent of the Disability Act. They are not included as they do not constitute the actual political decision as to why the law should be implemented and what governed operations when the law was to be interpreted and applied in practice. In this text, the terms 'Disability Act' and 'Government Bill' will be used synonymously. When we refer to the legislation (SFS 1993:387) the relevant section is stated and when reference is made to the Bill (Government Bill 1992/93:159) the page number is specified in brackets.
Data were processed using text analysis as proposed by Bergström and Boréus (2012), termed analysis of ideas. They argue that an idea can be regarded as a mental construction and may 'be a perception of reality, a valuation of phenomena or a perception of how to act' (Bergström and Boréus 2012, 140). What we are interested in examining are the conceptions of reality and the values that are enshrined in the Bill and that are considered to be good, important, and desirable.
This study is conducted in a political science perspective, which means that ideas we are looking for have a foundation in this context and that ideas from other scientific perspectives are not taken into consideration. Basically, determining and describing the ideas in the Act and the Bill can be done in two ways using a text analysis. On the one hand, one can determine the ideas one wants to study in advance and use them to examine the material (Bergström and Boréus 2012). On the other hand, one can approach the text in a more open and a relatively unbiased way and create a space for finding the ideas in the text (Alvesson and Sködberg 1994). We choose the latter method because we will not decide exactly in advance what ideas we want to examine, and at the same time we wish to be open for ideas that can be discovered in the text.
Text analysis began by repeatedly reading the Bill in order to become acquainted with the body of text as a whole. This was followed by more focused reading where any text that could be linked to the purpose of the study was cut out and placed in a new document which was reread several times for the purpose of identifying clusters of components connected to values. The various components were sorted in subcategories that could be linked to different values. These categories were taken as the starting point for further reading of the Bill. We then went back to the original text in order to validate the categories we had identified. The next step in the analysis process was to abstract value categories further to become more general conceptions. In this phase, we worked with category names and passages that were linked to these. Categories and text pieces were sorted into four different clusters of ideas labelled as Citizenship and justice; The collective and integration; The individual and autonomy; and Decentralization and power shifts. It must be emphasized here that these ideas are the result of the analysis and are described in the Results section. The reason we present them here, instead of as a summary in the Results section, is to make it easier for the reader to follow the analysis throughout the Results section. Table 1 presents a schematic overview of the analysis process and a summary of the result of the analysis.
Central and representative sections of text that illustrate the basic ideas of the material have been included in the Results section. It should be noted that, to some extent, representative text samples from different parts of the documents are used in the same passage. The primary reason for this is to bring together and concentrate similar thoughts in the same place. When the concept of state is used it primarily refers to the public actorsthe central government and the municipalities.

Citizenship and justice
The idea of citizenship was a conception of reality that clearly emerged from the Disability Act. The value of justice with its three subcomponentsequality, individual rights, and requirements for implementation of servicesprovides the primary definition of the conception of citizenship in the Bill.
The first obvious component of the value of justice consists of thoughts and ideas about equality and is reflected in Section 5 of the Disability Act.
The activities pursuant to this act shall promote equality in living conditions and full participation in the life of the community for those persons referred to in Section 1. (Disability Act, Section 5) The Bill further states that activities based on the Disability Act 'should be aimed at achieving life on as equal terms as possible for people with severe disabilities and other people' (50), and that disabled people needed special assistance 'to build and maintain living conditions that are equivalent to other people' (56). As a basis for arguing for equality it is emphasized in the Bill that people with severe disabilities experience poorer living conditions than others (43,49). The Bill also states that 'People with disabilities have not been sufficiently included in Sweden's welfare development' (42).
Based on an interpretation of the text, it may be observed that there was a group of citizens, those with comprehensive disabilities, who did not experience the same living conditions as most of the population. In an attempt to address this inequality between citizens, state resources would be used for targeted interventions aimed at those in greatest need. In this manner the state, through its economic distribution policies, would create the preconditions for a just society where even the citizens who experienced great difficulties in life were to be able to live on an equal footing with other citizens.
The second aspect of the value of justice can be linked to individual rights. Given that people with comprehensive disabilities do not enjoy the same living conditions as other people (43)and that it is emphasized in the Bill that they have found it difficult to assert their interests and needs against government agencies (49)the Disability Act wishes to 'define the rights of people with disabilities' (44) and that it is 'a law on individualized rights' (43) to 'specify in detail the inputs to which the individual is entitled' (50). The Bill also states that these rights need to be clarified in special legislation 'to strengthen the position of people with disabilities in society' (50).
When there are differences in living conditions between different members of society, there is, according to our interpretation, value in giving some groups who find it difficult to assert their interests and needs a statutory right to achieve the same living conditions as other citizens. The state assumes that society should be just towards all its citizens, and if you are not strong enough as a citizen to assert your needs, the state may, according to the underlying principles of the Bill, guarantee these by creating statutory rights instead.
The third component of the value of justice is the actual implementation of the measures stipulated in the Disability Act, and it is stated that: The measures shall ensure that an individual shall have good living conditions. The measures shall be lasting and coordinated. They shall be adapted to the individual needs of the recipient and be framed in such a way that they are easily accessible for those who need them and enhance the ability to live an independent life. (Disability Act, Section 7) The individually tailored measures were to be designed according to the principle of proximity (172) and guarantee good quality (102). It also emphasizes that 'The individual must be able to rely on the fact that the measures will be provided for as long as necessary. Continuity must be ensured' (172). It is also important that if an individual is the recipient of several measures, these should be coordinated and not be isolated from each other, which imposes certain demands on the actors who are responsible for their implementation (172). In order to ensure this, each person will be offered an individual plan with which the municipality will work to coordinate activities (Disability Act, Section 10 and Section 14).
In the Bill it appears that there is a risk that the implementation of measures under the Disability Act will not be carried out in an appropriate manner and that the law must clarify the procedures and requirements for implementation. People with comprehensive disabilities are consequently ensured, as citizens, that they will be treated with justice when it comes to having their services implemented according to the legislature. It should also be noted that the Disability Act requires good living conditions, which is more ambitious than the reasonable standard of living assured by the Swedish Social Services Act (SFS 2001:453, Chapter 4, Section 1).

The collective and integration
The idea that all individuals in society are part of a collective is a perception of reality that emerges from the Disability Act. The value of integration, consisting of the components living as normally as possible, in community with others and participating in society, particularly demonstrates how the notion of the collective emerges in the Bill.
The goal of the Disability Act is to 'promote equality in living conditions and full participation in the life of the community for those persons referred to in Section 1. The objective shall be the possibility for the individual to live as others do' (Disability Act, Section 5). This means, among other things, that 'Public policies should be aimed at people with disabilities or families with a disabled child to help them to live a normal a life as possible' (43). It is further emphasized in the Bill that people with comprehensive disabilities should be able to 'create a dignified life, as similar to other people as possible and in community with others' (50), and efforts must be made to strengthen the individual's ability to 'participate actively in society' (50). The Bill also gives the examples of what is meant by a normal life: The aim should be that people with disabilitiesjust like other citizensmust be given the opportunity to acquire a good education, be gainfully employed, live in secure, decent housing and participate in various cultural and leisure activities. (44) The duties of the municipality include helping people with disabilities to have access to work, study facilities, and public recreational and cultural amenities (Disability Act, Section 15).
As some aspects are highlighted as normal, it appears that the Bill reflects the fact that all human beings in general are the same and that there is something that is normal. Based on these values, humans are regarded as part of a collective and the collective determines what is normal and is superior to the individual. For people who are different, the state therefore points out the direction in which we, as collective citizens, should strive. The Bill provides a clear statement of what the state regards as normal and desirable. It also gives an indication of the preconditions for integration into society.
In contrast to this the Bill also adopts an environmental approach to disability and states that disability is not 'any property of the individual, but a relationship between the injury or disability and the person's environment. Such an approach places great demands on the transformation of both the physical environment and different service measures' (42). The text indicates that the aim is not to focus on helping and supporting people with disabilities to modify their abilities, but instead the environment must be altered to achieve integration into society through a life like everyone else's in the community.

The individual and autonomy
The idea of the individual as a conception of reality emerges significantly in the Disability Act. The value of autonomy, with its three components of independence, choice, and empowerment, together with integrity, particularly emphasizes the notion of the individual in the Bill.
One important aim of the Disability Act is, on the basis of the individual's needs, to strengthen 'the ability … to live an independent life' (Disability Act, Section 7). This would mean measures, according to the Disability Act, that would be 'based on the needs the individuals themselves find important to fulfil in order to live as independent a life as possible' (51, see also 50, 96). This means, among other things, that citizens should experience considerable freedom and autonomy from the state and the Bill is clear that attention should be focused on 'the ability of individuals to direct their own lives' (44).
The Bill also refers to a report stressing that, despite the series of reforms in the disability field in the 1970s, a number of problems had developed including 'creating a structure where a strict regulatory regime, bureaucratic organization, key decisions and strong professional groups were supposed to contribute to reform realization' (44). It stressed further that 'It is clear that the welfare state sometimes shows too little regard for the individual's wishes. People with disabilities and their families must take more control over their own lives' (44) and that the 'Families and people with disabilities should not have to feel at the mercy of decisions made by authorities and administrators' (43). These passages indicate that the Bill sees the state as the entity that has control over the lives of citizens in general, and in particular of citizens with disabilities. In other words, the Bill states a criticism of the state regarding the individual's freedom of choice.
The Bill emphasizes an individual-oriented approach and the individual's independence and autonomy. Services should be based on what the individual considers to be important in life. Consequently services need not be designed according to, or limited by, other individuals or groups, organizational structures, or environmental designs. The will of the person with disabilities must, in other words, prevail; they must choose, they must exert influence.
In relationship to the components of choice and influence, not least integrity, the individual's right to decide about the services required is emphasized. The Disability Act is based on: respect for the individual's right to self-determination and privacy. As far as possible, it shall be ensured that the individual shall be allowed to influence and jointly determine the measures to be provided. (Disability Act, Section 6) Among other things this means that 'The specific measures shall be based on respect for the individual's right to exert control over their lives and over their affairs ' (96) and that 'The individual should have a direct influence, both in the planning and design of the service and in its implementation' (50). When a measure is implemented under the Disability Act, the individual will be offered an individual plan stating agreed and planned actions (Disability Act, Section 10). This plan will be prepared in consultation with the individual concerned and professionals and be reviewed regularly, at least once annually (Disability Act, Section 10).
As a basis for the position that emerges from the Bill it is emphasized that weaknesses had been identified in previously implemented initiatives for people with disabilities. That was especially true for 'poor preconditions for disabled people to make decisions about their own situation and influence the design of service and support' (42). There is a fundamental view in the Bill that 'A person who has a comprehensive disability may never be considered the "subject of action", but should be regarded as an individual with rights' (43). These text sections could be interpreted to mean that the state and the public sector in the past, in many cases, did not take the wishes of disabled people into account and they had no influence, choice or autonomy regarding the implementation of their services.
As regards the choice and influence components it can, paradoxically, also be deduced from the Bill that there are a number of limitations. Services should be provided if requested by the individual, but may also be provided if the individual 'manifestly lacks the ability to form an opinion on the matter, a person having custody, a personal representative, legal guardian or trustee may request the measures on her or his behalf' (Disability Act, Section 8). This is clarified in the Bill when it states: However, there are people who have very limited opportunities to express their will and there are situations where a disabled person cannot, or finds it difficult to, exert any influence. In some cases, a person may thus need support or help to make certain decisions. (50) When another person represents the person it is emphasized that: 'This requires, however, very great sensitivity and respect for the wishes the individual expresses' (50, see also 97).
The Bill does state nuances or contrasts linked to choice and influence for comprehensively disabled people. On the one hand, people with disabilities are entitled to control their situation and their lives; on the other hand, there are circumstances where this cannot or will not occur. The latter is primarily linked to people who are assumed to lack self-awareness. This should mean that professionals must make an assessment of the decision-making ability of the individual concerned. The Bill consequently expresses codetermination and influence in these cases, which is in contrast to self-determination and freedom of choice. Codetermination may also mean that the individual does not him/herself decide on actions but listens to and/or complies with the professionals' decision. It should also be made clear that the assessment of the decision-making capacity of the individual should cover the entire process as regards services under the Disability Act, that is, requesting, planning, designing, and implementation.

Decentralization and power shifts
The idea of decentralization was a conception of reality clearly stated in the Disability Act. The value of shifting power and moving focus from central to local responsibility illustrates the Bill's conception of decentralization very clearly.
It is clear in the Bill that the municipality will be responsible for 9 of 10 services under the Disability Act for citizens residing in the municipality (Disability Act, Section 2, and Section 16). The basis for this conception is a discussion in the Bill regarding the level of society where responsible for the Disability Act is to lie.
The current trend towards transferring responsibility for public services from central to local level, and that tasks in some municipalities will be referred to local councils, will be beneficial for opportunities for local adaptations of different activities. This trend, however, has also been shown to lead to differences in the quality of support and services to people with disabilities. The preconditions in terms of expertise and resources, as well as level of ambition in the area of disability, have been shown to vary considerably between municipalities and in some cases between local councils. In my view the legislation in the disability field can play an important role in an increasingly decentralized society, providing for equal living conditions. (49) There is an awareness of the pros and cons of responsibility resting at local or central level. It is also clear from the Bill that: People are different. Conditions and requirements are different in different families. Preconditions alter in different parts of the country. This is why regulations do not work (43) … The legislation now being proposed is not detailed, it is intended to define the rights of people with disabilities. It intends to provide the individual and, in some cases the municipalities, with opportunities to shape services in the best possible way. (44) In order to avoid differences in support and services for people with disabilities, it is the intention of the Disability Act to ensure and guarantee a certain level of support to the entire group regardless of where they live. As regards the interpretation of the law and what is to be determined in the individual case, the power is decentralized and lies at the local level. A shift in power also entails a risk that interpretations will be different between municipalities, which the Bill notes had previously occurred in this field. Decentralization and power shift may lead to lack of legal certainty because different citizens are given different assessments that are more dependent on local conditions than on the rights they have under the law. How these potential differences should be handled is not discussed to any great extent in the Bill. It focuses more on the individual's rights being guaranteed by the fact that decisions on services in accordance with the Disability Act can be appealed against and the courts will then decide how the law should be interpreted (Disability Act, Section 27, and 103).

Discussion
In the Disability Act, the concept of citizenship and the value of justice emerged as important aspects. The idea of citizenship may also be observed in a longer time perspective. The idea of a more universal welfare policy was clearly manifested in the early 1930s and was developed and improved continuously during the mid-and late 1900s through a variety of political reforms. During this welfare state expansion, citizenship changed meaning (Petterson et al. 1998). The emphasis was on social rights, social benefits, and thoughts about justice and equality prevailed. One underlying tenet of the social system was that an individual who, for various reasons, experienced difficulty in managing would be provided with access to basic social rights by the state (Petterson et al. 1998;Lindqvist 2009). Although Marshall (1950) describes this as a phase in the development of citizenship and that it gives the right to primarily economic and social security and is consequently a precondition for just and equal living conditions for all citizens in the community. The Disability Act can be regarded as an example of such a targeted social policy aimed at developing and strengthening social citizenship for people with comprehensive disabilities (Lewin 1998).
Conceptions of the collective and the individual which appear in the Disability Act are clearly reminiscent of a central political science discussion concerning the state's relationship to its citizens (Rothstein 2010). The notion of the individual and the value of autonomy have their roots in liberalism, emphasizing citizens as autonomous and independent individuals with capacities to make their own choices with regard to what is good for their lives, and that the state should not interfere in, restrain, or direct the individual's life plan (Lehning 1990;Rothstein 2010). The concept of the collective and the value of integration are rooted in communitarianism, meaning that the government generally decides and establishes values concerning what a right and good life for the citizen is (Lehning 1990;Rothstein 2010). These two conceptions of reality, when it comes to the state's relationship to the citizen are interwoven in the Bill with regard to both historical descriptions of the situation of people with disabilities and present intentions of the Disability Act. It may be concluded that the Bill generally captures a movement from communitarianism to liberalism.
There are similarities between the shift in the state's relationship to its citizens and the discussion of government and governance. The concept of collective and the value of integration, grounded in communitarianism, could be related to the ideas of government, for example, with a stronger and more centralized state with national programmes and rationalistic planning (Premfors et al. 2003). On the other hand, the concept of individual and the value of autonomy, based in liberalism, could be related to ideas in governance and its focus on, for example, local autonomy, marketoriented forms, and involvement of different actors from society (Bevir 2011).
The concept of decentralization and the value of a shift of power from state to local municipalities that emerges in the Bill mean that the responsibility is moved from central to local level. This shift could also be interpreted as a move in state governing from government based on centralization to governance ideas of decentralization. In Sweden, 290 municipalities are responsible for Disability Act measures. This decentralization creates significant freedom and room for local municipalities to interpret the Bill that may lead to negotiation between local priorities and resources and at worst to inequality with regard to meeting the individual's needs and demands for support. Several researchers have also pointed out differences between local municipalities with regard to the interpretation and application of the Disability Act as well as the organization of service provision according to the act (Bengtsson 1998;Socialstyrelsen 2007;Lindqvist, Markström, and Rosenberg 2010). It may be suggested that there is a risk that citizens with comprehensive disability are treated unequally due to local issues and end up lacking legal security . As citizens should, according to democratic principles, be equal before the law, individual needs are to be assessed in the same manner no matter where they live in the country, which is sometimes termed spatial equity (O'Higgins 1987;Boyne, Powell, and Ashworth 2001).
The conceptions of reality and the values of a number of components that were identified in this study are similar to those Sylvestre et al. (2007) identified as underlying the delivery of housing programmes for people with serious mental illnesses. One value was citizenship, consisting of access and affordability, housing rights, and legal security of tenure and accountability. Secondly, what they termed therapeutic values were composed of choice and control, quality, and community integration. There are a number of interesting similarities between the Sylvester et al. (2007) study and our workcitizenship, rights, and requirements concerning implementation, choice, and integration. This suggests that there are some ideas, values, and components which are relatively independent of national borders. Differences in results may be due to the fact that Sylvestre et al. (2007) examined one limited service, while our study has examined the entire law, and thus remained at a more overall level, including the right to 10 services, group homes being one of them.
Since the 1950s, development in terms of overall values in policy decisions and services for people with comprehensive disabilities has moved from state responsibility, centralization in the form of large institutions and the separation of disabled people from the community, to decentralization and municipal responsibility, normalization, and integration. In this context, it may be said that the results of this studywhere the values of justice, integration, autonomy, and power shift were identifiedare generally in line with this trend. The results can also in some way indicate the similarities between the shift of concepts and the values and the move from government to governance in state governing.
Considering the study's methodological strengths, the description of the analysis process is detailed. Data were first analysed by each author individually and then jointly in order to achieve consensus regarding the values and conceptions identified. The reader should also be able to determine whether the interpretations made were reasonable, as several representative passages were used. It should also be remembered that, in a process when a choice is made to pinpoint the ideas that characterize a text document, it is possible that other researchers might make different choices and interpretations. At the same time the ideas that could be identified in the Disability Act in this study are generally in line with other research.

Disclosure statement
No potential conflict of interest was reported by the authors.