Independent Living Institute

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Report of the Second International Expert Seminar
on Building Non-Handicapping Environments:
Renewal of Inner Cities

Prague, October 15-17, 1987

Download the Prague proceedings as a PDF file (420 KB)

Towards an Independent Life

Maria Roselius, National Board of Health and Welfare, Sweden

The purpose of our study is to describe and analyze the conditions that enable more people with chronic or temporary functional impairments to live at home. Community-based services together with the contributions of relatives guarantee this possibility today. The major question remaining is what type of personal assistance and care will be available in the future. Planning for care and personal assistance demands better information about the people who are dependent on it.

Our study focuses on the structure of needs. We have to know how need and consumption of care and personal assistance vary among different groups of people, which needs are general and which specific.

A first look at the results of existing studies reveals that our knowledge in this area is very incomplete. The statistics are inadequate and difficult to use as a basis for planning. There is hardly any systematic information about the groups of people who use in-home support services and home health care, nor about how these services are distributed among the groups. How do they vary with regard to socio-economic and cultural background? What are their needs today and what factors influence the consumption of services and care? More information is required in order to answer these and other questions such as: which needs are important and which of them are met today, what are the reasons for the unmet needs of specific groups, are there regional differences, what are the future needs and what measures need to be taken to meet them? These are the types of questions to which we want to find answers in our studies.


There is a very lively political debate in Sweden at the present time concerning the future of old age homes. The discussion is carried in the daily mass media and is related to explicit official goals and priorities, i.e. health care in general and care of the elderly, the disabled, the chronically ill and mentally impaired people in particular should be given in the individual’s home, according to their wishes and condition. The goal implies the gradual phase-out but also improvement of existing institutions.

Old persons and younger people with different kinds of functional impairment or disease generally live in their own home, e.g. 92% of all retired people. In the last few years, quite a few measures have been taken to make a more independent way of life possible. Many dwellings have been modernized, accessibility has been improved and different types of dwellings have been developed. During the last decade, services intended directly for old and disabled citizens have been considerably extended. Among the organizational efforts, collaboration between local authorities and county councils deserves special mention.

Present goals and legislation aim at the gradual dismantling of institutions. Statistically, this process affects about 49,000 people who today live in old age homes; 50,000 patients in long term care hospitals; 21,000 in psychiatric hospitals and over 7,000 mentally impaired persons.

The conditions for these 130,000 people who live in different kinds of institutions have been described by the National Board of Health and Welfare as part of an extensive study of the environment and living conditions in the country’s institutions. The study further reinforces the efforts being made towards more independent lifestyles and demonstrates that institutional care has many drawbacks, particularly with regard to self-determination and integrity.

A few facts from the study are:

The changes that have taken place during the last decade can be summed up as follows: There exist considerable regional variations caused, for example, by different demographic structures and different traditions in providing care and assisting people. Financial resources are also very unevenly distributed. Regional and local analyses must be developed in order to shed light on the complexity of the present situation which the efforts towards providing more open forms of living and care are now facing.

Personal Assistance

Together with the provision of dwellings and home health care, the capacity and quality of personal assistance is of the greatest importance in achieving the goal of independence for people with disabilities.

Personal assistance is, according to present legislation, offered to people with different kinds of functional impairment. It comprises help with household work as well as personal care. It also serves other purposes such as activation, rehabilitation, social contact and a sense of security. About 20% of all retired people (65 years +) receive some kind of personal assistance; almost half of this group are 80 years or older. Only 5% in the age group 65 and younger use such services. The need for personal assistance is greatest among those in the higher age brackets. 44% of all those aged 80 or more years receive personal assistance.

Of all those who receive personal assistance, about 15-20% (50,000) are considered to be in great need of help. Most of these also probably receive home health care.

A great amount of all assistance is given by relatives or close friends. Different estimates show that this "inofficial" assistance and care is two or three times greater than that rendered by institutions and authorities. According to periodical surveys on living conditions in Sweden (ULF) most older persons (84% in the 65-84 age group) know somebody who can give them assistance when they are temporarily ill. This applies also to people 85 and older.

The total number of persons who receive assistance has been reduced since the late 1970’s. The reduction applies mainly to the 65-79 age group. However, more people in the highest age group (80 years +) have received assistance during this period. Most commonly, assistance is provided once a week, while the trend is to concentrate on people with a considerable need for help. There is no simple way to explain the reduction in the number of people receiving personal assistance. Part of the explanation may be that the authorities have become stricter in determining who needs assistance.

Unfortunately it is not possible to describe how assistance is distributed among different categories of consumers. Age and sex are the only categories which we have statistics on.We cannot answer any of the following central questions: what is the total output and consumption of care and assistance for different categories; which groups receive what type of care and assistance; and to what extent are the needs and desires of the consumers satisfied?

Today we lack information on individuals, and thus we lack a comprehensive view. To a certain extent, our study will fill this gap.

Today we know for certain that one of the effects of de-institutionalization has been that the personal assistance staff sees new groups of people with a serious needs: the chronically ill, the mentally ill, the mentally impaired and other people with extensive disabilities. The new groups put new demands on the whole organization, but more specifically, on the individuals working in it; in this case, the home helper. It is generally accepted that personal assistance staff must receive further training in order to cope with its new and future role. This future role presupposes also that primary health care will be developed to provide care in the home. Services must be developed to provide help and care around the clock, such as emergency telephone services, etc. Discussion among planners and politicians is called for, regarding these changing circumstances and the subsequent quality of assistance and care.

The role played by relatives must also be observed. Efforts towards more open forms of care and living have put new demands on relatives’ contributions. Basically what is required is a change in attitude by all parties concerned.

Finally, an important circumstance. Sweden is a country with a high proportion of old people, i.e. about 1.5 million people (17-18%) are 65 or older. The number of very old individuals among these is increasing rapidly. At the same time, there is an insufficient supply of staff to deliver assistance services. This illustrates the complexity of the problem. How do we cope with these realities? To what extent is it possible to achieve our social goals under these circumstances? How can we avoid competition among different groups for limited resources? What do we know about the desires and needs of the individual?

It is necessary to take the step from national and regional analyses to the individual level in order to reveal the problems and decide on the most appropriate measures to take. Our project proposal is based on the development and trends described above.

Theoretical Framework

Before presenting the proposed projects, we would like to describe the theoretical framework within which they fit. We have chosen a perspective related to the individual. In our model an individual’s chances of leading an independent life are influenced by a host of variables. These chances, in turn, are in actual fact closely related to a person’s own independence and integrity. The variables are mutually related in many ways. The following list is, naturally, not exhaustive, but it contains the factors we consider to be important and which we will examine.

Thus, an individual’s chances of leading an independent life are assumed to depend partly on his/her own resources - current and previous - and partly on the resources that exist in the neighborhood. Health and an individual’s physical and mental capacity are some of the most important individual resources for an independent life. The social network of the individual can also in many cases be decisive in achieving an independent way of life. Behind these fairly self-explanatory factors there is, we believe, a whole set of what we call background factors: age, sex and socio-economic and cultural background of the individual, and last but not least, the personality of the individual as expressed in terms of attitudes and demands.

It can be assumed, for instance, that the demands and competence of an old person are, to a great extent, dependent on the type of occupation this person had before his/her retirement. "The most important factor ought to be the type of work: to what extent it has been a skilled or professional occupation and/or housework, which demand particular skills etc., and to what extent it has involved a high degree of control and autonomy". One can therefore assume that "a high degree of autonomy in one’s occupation or a high social position lead to increased or maintained resources, and a low consumption of medical and social care. This may, however, lead to a high consumption of personal assistance of a simple nature, for example help with cleaning. A low degree of autonomy and low social position lead to shrinking resources and a high consumption of care, personal assistance and care in the form of social and psychological support."

Cultural background can greatly influence how people regard their way of life and their attitudes towards any assistance they receive from relatives and authorities. Cultural differences may arise between people born and brought up in different countries, between people from different parts of Sweden, between city dwellers and those with roots in an agrarian society and between people who have been dependent on care for many years and those who are "newcomers". Differences may also arise between men and women.

Cultural background also affects the health and the social network of the individual. It also directly influences opinions and ideas about relationships between relatives and friends, and to what extent one is inclined to rely on public support on becoming old and sick, how one views assistance and care received and to what extent one is inclined to influence one’s own situation.

In our model, the importance of the individual’s resources has been schematically outlined. The part of the model which deals with individuals’ resources shows that both health and social network act directly but are in their turn dependent on the person’s socio-economic and cultural background, which in its turn influences an individual’s ability to cope with an independent life, both directly and indirectly.

Among the resources surrounding the individual is the dwelling - its size and standard - and also its suitability in relation to the physical and mental capacity of the individual. The immediate environment of the dwelling and further, the characteristics of the neighborhood are also important factors when judging the likelihood of an individual being able to cope with an independent life.

Finally, an individual’s possibilities for independent living will be dependent upon the whole output of services provided by local authorities and county councils: personal assistance, transportation services, home health care, various kinds of financial assistance, etc. These variables should be viewed against the background of other activities, services and planning (physical, social, economic, cultural) provided by the authorities. The political profile and local traditions should also be mentioned here.

With the model as a basis we will continue to specify our questions and look for the critical factors or combinations of them and, further, to seek the means of compensating for them.


The model can be seen as a basis for formulating possible subprojects regarding the conditions for an independent life. We plan to proceed in four stages aimed at shedding light on different parts of the model. Subproject 4, which is a crucial part of the overall project, covers the whole of the model. Each subproject differs in method and disposition.

Subproject 1 Community-based social services
The aim here is to achieve a uniform and systematic description of the present situation concerning output and consumption of the social services provided by local authorities and county councils. A survey of existing statistics and studies will show how assistance and care functions in different parts of the country, what its volume and capacity are, and what the cost is for the individual. If possible, development tendencies will also be described. The survey will provide a basis for the analysis of information from other subprojects.

At this point we are collecting the data. Some has already been published, for example, in a report on the health of the Swedish population.

Subproject 2 Neighborhood
Here, we wish to give examples of both good and unsatisfactory residential environments for the needs of the groups studied. A number of residential areas will be mapped, especially those with a high proportion of old residents or with institutions in the neighborhood.

A number of examples already exist. In the next stage, social analyses of the neighborhoods and the plans and goals of the local authorities will be carried out.

Subproject 3 Possibilities of an independent life for selected groups - a case study
This subproject is partly a prestudy for a larger interview study (subproject 4) and partly a more thorough analysis of the questions surrounding the resources and needs of different people, and how these needs are met by the community-based social services. A very important aim is to shed light on the role of relatives and the role that pressure groups play today in individual cases.

Finally, we will attempt to identify the problems which exist for all parties concerned. Suitable methods here are in-depth interviews and observations.

Subproject 4 Possibilities of an independent life for different groups
Our aim with this general study is, with the resources of the individuals as a starting point, to shed light on the needs of different groups and the consumption of assistance and care relative to different lifestyles. This project has a wide approach and is in fact a study on living conditions, with a special focus on health and care.

Such a survey should be based on interviews with a sample of 4,000 - 5,000 people of all ages.

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