Magnus Tideman, Professor of disability research, University of Halmstad, Sweden
The changes that have taken place for persons with intellectual disabilities in Sweden from the beginning of the 1990s until today are characterised by a number of clear trends. Institutional living has been replaced by residential arrangements with special service or the possibility for individuals to live in apartments of their own in ordinary residential areas, the level of variation in support and service depending on the city/town/area in which individuals live has increased, and private companies are becoming increasingly involved within the disability care sector. At the same time, there has been a significant increase in the number of people being categorised as intellectually disabled, as well as an increasing level of resistance among young adults against being viewed as passive care receivers.
In order to guarantee good living conditions for persons with disabilities, and to increase their levels of participation in society, a new law on rights in the area of disability came into force in Sweden in 1994. For persons with intellectual disabilities, this new law meant the right to certain defined individual measures, that the responsibility for support and service as well as for education was decentralised and passed over to the local municipalities, and that the dismantling of the institutions was to be completed. At the same time that the new legislation was introduced, societal development was dominated by economic problems for the public sector and a New Public Management (NPM)-inspired restructuring of the public sector with, among other things, increased levels of involvement from private enterprise within the areas of schooling, healthcare and disability care/care for the elderly.
The process of dismantling the institutions was completed at the start of the 21st century. Institutional living has largely been replaced by various forms of residential arrangements with special service in ordinary residential areas. This has happened at the same time that market solutions have also made themselves felt within the area of disability, and during the first decade of the 21st century an increasing number of residential arrangements with special service and daily activities have been outsourced to private contractors. To some extent this has led to increased freedom of choice for the individual, although the picture is still largely dominated by limited opportunities for participation, self-determination and making one’s own choices in everyday life. Persons with intellectual disabilities seldom receive real opportunities to choose their accommodation or workplace. Even if the residence’s physical design and size has changed, the types of routines and traditions that existed in the institutions are still to be seen today, as are the isolating effects in the form of special measures and activities for persons with intellectual disabilities.
At the same time, we see a picture developing of increased levels of variation between individuals’ living conditions depending on the city/town/area in which they live and their ability to negotiate regarding the service they receive. Factors such as choice of organisation, economic situation, political control etc. at local level, along with increased demands on the individuals’ own ability to negotiate regarding the service they receive and to pursue their own interests, have led to local and individual differences in people’s life situations. One of the more decisive variables for explaining differences at local municipal level is whether or not a region has had a tradition of providing care in the form of nursing homes in the municipality, and if that tradition has been backed by the political majority. In municipalities where there is a history of providing institutional accommodation for persons with intellectual disabilities, such municipalities are generally more generous with measures in open forms, which is also often characteristic of municipalities with a left-wing political majority. In line with NPM, individuals’ knowledge and understanding of legislation, and their ability to argue for their needs, has become more important. For persons with intellectual disabilities, this means that there is a greater need for strong representation. People who are unable to pursue their own interests and who lack representatives able to pursue those interests on their behalf, run the risk of missing out. All in all these development trends mean that the municipality in which a person lives, and that person’s own ability to negotiate regarding the service he/she receives, is becoming increasingly significant in determining the level and quality of support given to a person.
These days the living conditions for the group defined as persons with intellectual disabilities are considered to be the same as they were in the 1990s. This means that, apart from the standard of accommodation, no significant changes have occurred since that time to reduce the difference in living standards for persons with and without intellectual disabilities. At the same time, the development we are seeing points to an increasing level of variation within the group itself, something that is linked to, among other things, an individual’s ability (or lack thereof) to negotiate on his/her own behalf.
The change that has led to significant consequences is that the number of children and adolescents being categorised as intellectually disabled has increased significantly during the last 15 years. A large number of students in primary school have been categorised as such and have been moved over to the special form of schooling known as special school (or “särskola” in Swedish). The reasons for this can mainly be found in the increased theorisation of the primary school and the primary school’s inability to provide students with learning difficulties with adequate support due to reduced economic resources. The vast majority of young adults with a secondary special school background go directly to the daily activities programmes within disability welfare and do not appear on the ordinary labour market.
The general development towards decentralisation and increased municipal freedom has opened up for freer forms of activity within disability care and has also created conditions for increased individual influence. New activities have appeared and developed whereby young adults with intellectual disabilities are able to meet regularly in order to together strengthen their control over their own lives and exert influence over the local community in the direction of increased participation and changing attitudes to intellectual disability. An increasing number of persons with intellectual disabilities do not accept the traditional role of the disabled that is associated with daily activities and other forms of societal support and service. They are choosing to position themselves either entirely or partly outside society’s welfare measures, and consequently new forms of fellowship are being developed. The growth of new forms of activity by and for persons with intellectual disabilities can be interpreted as those persons offering resistance to society’s traditional treatment and means of offering support and service.
In summary, the development that has taken place for persons with intellectual disabilities in Sweden from the beginning of the 1990s until 2012 can be described, partly as a process from relative homogeneity to increased levels of variation in support and service as well as education, and thus even increased variation in living conditions, and partly as a process whereby shrinking normality has resulted in increased categorisation. Against the background of the above description of the development that has occurred, it is relevant to pose the question of how the Swedish disability research contributes to the development of knowledge.
According to a very recent mapping of Swedish disability research, the medical/health science and behavioural science research currently accounts for more than 80 % of the total amount of research resources being employed. This type of research is of course important, but it almost exclusively has an individual perspective and interest. It is through measures directed at the individual that changes are to be achieved. The amount of social science research, which often has a broader perspective and which studies the interaction between structures and individuals, is currently very limited. Different forms of support and service – there are a number of studies into personal assistance – are barely researched at all. An increasing amount of such measures are being carried out by private enterprises, but there is more or less a total lack of research into this area. Social policy-oriented research, which highlights the consequences of these system changes, is conspicuous by its absence, as is research into how society, through its organisation, for example, creates disability, and how more general measures can reduce the need for individual measures. Disability studies research into the various barriers – economic, political, cultural, etc. – that create, support and maintain disability is rare, as are studies into the lived experience of disability. This means that there is also a need for more research from within and more participant-based research.
As I see it, there is reason to derive much satisfaction from, among other things, the fact that the process of dismantling the institutions has been completed, and that persons with intellectual disabilities are creating resistance against being treated as passive care receivers. But there is also reason to be concerned about the lack of relevant society-oriented disability research being undertaken, as well as about some of the changes that are characterising the current development, such as the increased categorisation of individuals as intellectually disabled, and the increasing levels of variation in individuals’ access to support and service.