Ratzka, Adolf. 1986. "Independent Living and Attendant Care in Sweden: A Consumer Perspective." (Internet edition, 1996).

As a description of the present Swedish situation the monograph is getting old and outdated. Much has changed in Swedish disability politics. The government´s austerity programs during the last few years have also affected the disability sector. Living conditions and services have in many instances worsened. A notable exception is the Personal Assistance Reform (in Swedish known as "Lagen om Assistansersättningen" or LASS) which grants eligible persons the legal right to receive funds directly from the national social insurance scheme to hire one´s own personal assistants or to purchase such services from the provider of one´s choice.

The reform has come about to a large extent due to the pioneering efforts of STIL, the Stockholm Cooperative for Independent Living, its demonstration of the viability of consumer-run services, and its political work.

As a background description of the factors leading to the new social movement started by STIL and the PErsonal Assistance Reform the monograph is still very much relevant. After browsing through the monograph the reader will better understand the articles found in this database about STIL and its impact on present day Swedish social policy in this area.

For our Japanese readers: the monograph has been updated and translated into Japanese and is available from Gendai Shokan Co., Ltd., 2-2-112 Misakicho Chiyoda-ku, Tokyo.

Adolf D. Ratzka, PhD
Founder of STIL

March 1996

Acknowledgements

The present study would not have been possible without the support and kind encouragement of many people. First of all, I would like to thank the World Rehabilitation Fund, Inc., New York for a grant which enabled me to spend three months in the spring of 1985 in the United States working as a guest researcher at the World Institute on Disability in Berkeley, California. The present monograph has its origin in my work at the Institute and my talks at several conferences during this period, in particular, the conference on attendant care in Washington, D.C. in March 1985 sponsored by the World Rehabilitation Fund and the Third International Polio and Independent Living Conference in St. Louis in May 1985 sponsored by the Gazette International Networking Institute, St. Louis. I am especially indebted to Ms. Diane E. Woods, Project Director and Dr. James F. Garrett, Executive Vice President of the World Rehabilitation Fund who arranged the publication of the study.

A number of persons reviewed the manuscript and through their encouragement, critique, suggestions, and questions forced me to clarify and improve the monograph. Among them I would like to thank my friends and colleagues at the World Institute on Disability Ms. Judy Heumann, Ms. Joan Leon, Dr. Simi Litvak, and Mr. Hale Zukas; Dr. Gerben DeJong, Drs. Patricia and Joseph Kauffert, Faculty of Medicine, University of Manitoba, Winnipeg; Dr. Margaret A. Nosek, Independent Living Research Utilization, Texas Institute of Rehabilitation Research, Houston; Ms. Linda Toms Barker, Berkeley Planning Associates, Berkeley; Dr. Caroline L. Vash, Ms. Karin Månsson, Handikappinstitutet, Stockholm; Ms. Margareta Nordström, formerly of the National Board of Social Welfare (Socialstyrelsen), Stockholm; Mr. Lars-Olof Petersson, National Association of the Traffic and Polio-Injured (Riksförbund för Trafik- och Polioskadade), Stockholm; and Dr. Gerdt Sundström, Department of Gerontology, University of Jönköping.

I cannot list all of those who have encouraged and supported my interest and work in the area of consumer-controlled personal assistance. But I do want to mention my friends in the international Independent Living Movement, Ms. Judy Heumann and Mr. Ed Roberts, World Institute on Disability, Berkeley; Ms. Gini Laurie, Gazette International Networking Institute, St. Louis; Dr. August Rüggeberg, Munich, West Germany; Mr. Kalle Könköllä, MP, Finland. I also wish to thank Mr. Folke Carlsson, National Board of Attendants' Service (Styrelsen för vårdartjänst), Stockholm, the mentor of the STIL-project; Prof. Sven Thiberg, Institute of Technology, Stockholm; and, most importantly, my friends at STIL (Stockholm Independent Living group) and all the other consumers of personal assistance who let me share their experiences.

The shortcomings of this monograph are entirely my responsibility and can in no way be attributed to any of the above listed persons or organizations.

Adolf D. Ratzka, Ph.D.
Royal Institute of Technology
Stockholm
February 1986

About the Author

Dr. Ratzka has been using personal assistants since 1961, when he became disabled by polio in his native West Germany. He received his academic training at the University of California at Los Angeles (B.A. in Sociology, M.S. in Business Administration, Ph.D. in Management) and the University of Stockholm (fil. kand. in Psychology). Since 1973 he has had his base in Stockholm, Sweden where he works as research economist at the School of Architecture, Institute of Technology. His current research interests include cost-revenue studies on accessibility in housing, de-institutionalization, and personal assistance for people with disabilities and older persons.

Dr. Ratzka has been a consumer of personal assistance services in West Germany, the United States, and Sweden. Influenced by his frequent contacts with the Independent Living Movement in the US and other countries he took the initiative for setting up a pilot project in Stockholm where consumers of personal assistance organize and administer their own individual service.

Note to the Reader

The title of this monograph contains the expression "a consumer perspective". Implied here is the notion that there is no "value free" treatment of social policy and that there are several viewpoints from which to approach attendant care programs and social services in general. Much of the existing work in this area, be it descriptive or analytic, is commissioned or undertaken by government bodies or service providers. As a natural consequence, such studies tend to focus on aspects such as budgetary requirements or the administrative needs of the agency and its workers. Seldom is the emphasis on the needs of the consumers of these services. While, for example, the discussion of costs invariably is paid a great deal of attention, the quality of the services - the variable that is uppermost in the consumer's mind - is quite often blatantly overlooked. Therefore, analysts and researchers who want to support the demands raised by people with disabilities for services which allow full participation and equality, have to propagate the notion of consumer-oriented research. Consumer-oriented research here means work which uses consumer-oriented criteria and, ideally, is consumer-initiated and controlled. The present study carried out under the auspices of the World Institute on Disability, a consumer-run policy research and training institute, is an attempt in this direction.

I find it difficult to give a balanced analysis of Swedish social policy to a non-Swedish audience. There is a strong temptation to concentrate on the accomplishments of the Swedish system and to focus on the impressive array of cash payments and in-kind benefits that make one's material life as a person with an extensive disability so much easier in Sweden than in the other countries I have visited and lived in. Speaking abroad to disability advocates and service providers I feel very strongly that I am expected to provide positive examples of what can be accomplished by a country's population and politicians who, for the most, believe in equality - not only at the starting line but also at the finishing line - and who see economics not as an exercise in cutting taxes but as a means to improve the quality of life for as many as possible. And I do want to provide such examples.

On the other hand, Sweden is of course no paradise either, neither for disabled nor for non-disabled people. People with disabilities are still second class citizens in material terms as recent government investigations demonstrate. There is yet another problem area that deserves attention. The increasing professionalization of social services that I observe in several countries has come furthest in Sweden. As one of the negative effects of this development I see a growing dependence among persons with disabilities in many aspects of their lives, dependence on a large cadre of social workers and similar professions. It is their job to assist us, but many times the services they are providing are not designed in a way which increases our opportunities for self-direction; instead they often deprive us of possibilitities to exercise our own initiative, to use and develop our judgement and self-confidence. As a result, many of us do not feel in control of our own lives. In many countries the lack of material services makes people with disabilities openly dependent on the charitable inclinations of their surroundings and forces them into a restricted and undignified existence. In Sweden the mechanisms of dependence are much more subtle; many of us experience dissatisfaction, frustration, and despair without knowing where to look for the causes.

My critical analysis should in no way be interpreted as an attack against the existence and extent of these services, the political commitment which brought about the programs, and the underlying intentions of policy makers and service providers. It would be an unfortunate misunderstanding, if somebody would want to use the material presented here as an argument against "the welfare state". For people with extensive disabilities attendant care services are the very key to a dignified and productive life in the community. In my belief it is the government's responsibility to provide these services as a fundamental civil right.

My aim here is to draw attention to the more intangible and qualitative aspects of attendant care which impact on consumers' lives as powerfully as the quantitative extent of service provision. Such issues are power and control, self-determination, self-esteem, and quality of life. Hopefully, the monograph can contribute to a better appreciation of the difference between quantity and quality in service delivery, between the amount of hours provided on the one hand and the way they are delivered on the other, between the level of material means provided by the public and the level of control exercised by the individual consumer over how these resources are to be used, between being treated as an object and acting as a subject.

The initiative of STIL (Stockholm's Independent Living group) described in the text is an example for this distinction: The participants in STIL's pilot project advocate and defend the notion that it is government's responsibility to provide the financial resources for attendant care programs. But what they insist on is that consumers must be able, if they so choose, to organize their own service systems in order to obtain control over this important aspect of their lives.

I am well aware that the demand for consumer control may appear as a luxury to people who live in countries with no assistance programs whatsoever, to people who have to depend entirely on family or volunteers for these services, or to people who have to pay assistants out of their own pockets like my friend in California who spends a third of her modest annual income on such services. Thus, to many readers the problems addressed here might seem far removed from their every-day reality and too advanced. Yet with the continued rise of the Independent Living Movement people with disabilities the world over will demand personal assistance programs. It will be of paramount importance that we, the consumers, take the initiative in shaping these services such that we gain greater independence and more personal power through them.

The Author

Introduction: Definitions, Scope and Purpose of the Monograph

One of the main aims of the growing Independent Living Movement , the international civil rights movement of people with disabilities, has been to gain control over the services that are necessary for participating in society on equal terms. Of these services attendant care has been identified by the movement as perhaps the most critical prerequisite for a dignified and productive life for persons with severe disabilities.

Attendant care, briefly, consists of assistance through paid workers with dressing, bathing, personal hygiene, household chores and all the daily activities that a person cannot perform by himself or herself. Other terms in use for the same service are home care, in-home support or home help. Sometimes the distinction is made between household related tasks which might be called home chore, home helper, domestic or home maker service and more person and body related work which is commonly referred to as personal care. Most of these terms are unsatisfactory. For one, they create the impression that assistance is needed only in the consumer's home implying that people with disabilities spend their day inactively at home and not in the community pursuing work, travel, social, and cultural activities like everybody else. Assistance at home as well as outside the home is the very key to the ability of persons with extensive disabilities to participate in their community and any language that suggests the opposite has to be avoided. Also, commonly used terms such as "attendant" and "care" carry institutional connotations and do not project the image of active and self-directed consumers of such services. In the following the use of "personal assistance" is suggested which is hoped to convey a more positive and less restrictive image.

Personal assistance in any country is far from being available to all individuals with disabilities who need it. Where the service does exist it is often not provided in the extent and the form which would permit consumers to realize their potential in gaining independence. Thus, in order to be able to influence legislators and policy makers, concerned consumers and service providers are gathering information on those existing personal assistance programs that contain features which have been shown to support the aims of consumers. Among the countries that have adopted a national personal assistance policy the Scandinavian countries are known for their extensive programs in this area. It is for these reasons that Swedish personal assistance schemes for persons with disabilities and older people are presented here.

Comparative analysis in the area of social policy encounters many obstacles. Apart from insufficient opportunities for the sharing and exchanging of experiences across national borders one source of bias and misinformation consists of the fact that visitors engaged in exchanges of this type are typically not consumers of the services which they are reviewing. They face the problem of assessing service delivery programs of which neither they nor their hosts have direct experience. In many instances such information impedes comparative analysis and, ultimately, evaluation of the transferability of programs from one country to another. In the following monograph, the description of Swedish personal assistance programs is therefore supplemented by some analyses and assessments which are based on the author's experience as a consumer of these services.

Since people with disabilities are an integral part of the general population, social policy in this area cannot be viewed as isolated measures aimed at this particular segment of society but has to seen in the pertinent institutional framework and in the context of a country's total approach to income redistribution, social welfare, and health planning. Such a holistic view facilitates understanding, evaluation, and assessment of the transferability of individual programs from one social climate to another.

The presentation will therefore begin with a brief description of Swedish welfare policy and some of its more important features as they apply to the population as a whole. Next, an account of the services available to people with disabilities will be given. The focus of the report is on Swedish personal assistance programs. Such programs are available to a variety of groups, not just to persons with disabilities. Personal assistance services for people with disabilities are available for a range of situations such as assistance at work and school. Services for older and disabled citizens in their own homes are perhaps the most important prerequisite for keeping people out of institutions, as a brief survey of recent Swedish studies on de-institutionalization shows. The main body of the paper consists of a description and evaluation of such services based on statistical material as far as it is available, information collected through the author's contact with providers and consumers of the services as well as the author's own experiences. The remainder of the study is taken up by a discussion of some of the research issues raised in the presentation.

As a final introductory note, no specific references are made to the mentally retarded the reason being that all the programs described here are also available to this group. (The administration of the services might differ, since there is special legislation in this area.) Group homes and similar institutional or semi-institutional solutions for the mentally retarded, however, are not covered here.

II. Swedish Social Welfare Policy

Sweden is an industrialized country of some 8 million inhabitants who enjoy a relatively evenly distributed high standard of living. The extensive social welfare system for which Sweden is known dates back to the economic depression in the l930's when the labor-oriented Social Democratic Party began its almost uninterrupted rule. In the Scandinavian tradition government is viewed as a form of mutual insurance for all where, ideally, each citizen contributes according to his or her ability through paying taxes and is entitled to services according to his or her needs. In this tradition government has adopted a comprehensive view as to the circumstances in which intervention and support of groups and individuals is called for. As a result, the definition of what areas of human endeavor are to be considered under the influence of the collective is in Sweden wider than in most other countries. The comprehensive view on social welfare policy is backed up by an impressive array of policy instruments which can be described here only very briefly.

Division of Responsibility

The Swedish social welfare system is administered by the three levels of government: central state, county councils, and local governments. The national government is responsible for issuing laws and regulations and their enforcement. In addition, functions such as social insurance, housing subsidies, labor market measures including vocational rehabilitation and education are administered at this level.

The country is divided into 24 county councils which are responsible primarily for health care and related areas such as medical rehabilitation, provision of technical aids to persons with disabilities, and programs for the mentally retarded.

On the third level of government, Sweden is divided into 280 municipalities charged with the provision of housing, social services, public transportation, and schools. Each level of government has taxing authority. There is revenue sharing from central government to the county councils and the municiplities for specific programs. Local governments enjoy a relatively large degree of autonomy in both the extent and the type of services delivered depending on the local tax base and local political priorities. It is for these reasons that the provision of certain social services varies widely across the country with severe consequences for the geographical mobility of persons with disabilities as will be developed.

National Insurance Benefits Available to All

The backbone of Swedish social policy is the National Social Insurance which covers health insurance, pensions, occupational injury, and unemployment insurance. Swedish citizens and residents are covered regardless of income. Except for a flat fee for some of the services the cost of the National Insurance is borne by national income tax funds. Here a few examples are presented for the extent and type of coverage under the insurance.

Hospital care is covered by the insurance except for a nominal daily fee. Outpatient visits at primary health centers, hospitals or at private physicians who are affiliated with the National Health Insurance cost between 40 SEK and 60 SEK in l985 (1 SEK = $0.11 in l985) which covers all the costs of consultation, diagnosis, treatment including physical therapy. For prescriptions there is a flat fee of 50 SEK. Travel expenses incurred in connection with these visits are also covered. Persons with severe chronic conditions requiring constant medications and supplies are entitled to free medicine.

Sick leave allowances correspond to 90 per cent of the income which the beneficiary would have earned, if he or she had not been ill. This amount is taxable and is paid from the second day after notice has been given to the local insurance office. If an illness continues for more than 6 days, a doctor's statement is needed. There is no limit to the amount of time for which this compensation can be paid but, usually, after 90 days the insurance office will take up the case and recommend action as to how the patient can return back to work or should apply for retraining or disability pension, if the condition seems to be of long-term nature.

Pension benefits consist of old age, disability, and widows' and children's pensions. A disability allowance, for example, is granted to persons with functional impairment in order to provide compensation for the additional cost of living due to their disability. In l984 this tax-free allowance paid to persons with extensive physical disabilities was 1,100 SEK a month. (For comparison, the average gross income of an industrial worker was approximately 8,500 SEK a month in 1984.) We will return to the disability allowance in the discussion of alternative funding of personal assistance services.

In connection with the birth of a child, with or without a disability, the parents are paid an allowance to compensate for the temporary loss of income. The father is entitled to 10 days' paid leave. In addition, both parents together receive the equivalent of a total of 260 days' income which they can share in any way they choose, before or after birth. Parents are also entitled to a paid leave of absence of up to 60 days per child and per annum, for the temporary care of a sick child. After the eigth consecutive day a doctor's statement is required. Considering the liberal rules for sick leave and child care it is surprising to note that the average rate of absenteeism from work in Sweden was 21 days in 1984.

One of the main purposes of these insurance benefits is to encourage women's participation in the labor force. In 1978, 71 per cent of the women and 88 per cent of the men in the age bracket 16-64 were gainfully employed in Sweden. For people with disabilities the corresponding figure was less than 20 per cent despite a host of programs intended to promote mainstreaming this group.

De-Institutionalization Efforts for People with Disabilities and Older Persons

Sweden was one of the first countries to adopt the concepts of normalization and integration. There is now widespread support in the country for the notion that it is society's responsibility to provide the services necessary to keep older and disabled citizens out of institutions. These measures include cash payments for general income support and benefits in kind, legislation specifying a certain level of accessibility in the construction of public and residential buildings, the provision of special transportation services as well as personal assistance. At the end of this section some recent Swedish studies will be reviewed which investigated the reasons why older persons move to nursing homes and other institutions and what measures would have been necessary in order to prevent these moves.

Cash Payments

In recognition of the fact that a disability entails higher costs of living Sweden provides monthly payments to individuals with disabilities under several programs. Eligibility is established by a physician's statement. The programs include the disability allowance referred to above which is a tax-free general income subsidy adminstered by the National Insurance.

Housing expenditures are subsidized by many local governments in order to increase the effective demand of persons with disabilities for better quality housing. These housing allowances are available to the general public, mainly families with children and to retired persons, and do not carry the stigma of a welfare payment, because a large segment of the population qualifies for them. The amount of this allowance is determined by a formula which takes into account the number of bedrooms, household size, income, financial assets, housing costs including rent or monthly mortgage payments, and heating costs. The City of Stockholm, for example, grants an allowance to households with disabled persons in such an amount that housing costs do not exceed 22 per cent of the household's gross income adjusted for financial assets. As an example, a bachelor using an electric wheelchair for mobility with a monthly gross income of 7,900 SEK is entitled to 1,700 SEK to help him pay the rent of 2,900 SEK for his two-bedroom apartment.

Assistive Devices

Assistive devices for persons with disabilities are considered an important and cost effective part of the National Health Insurance. The major regional hospitals have a department for technical aids where occupational and physical therapists under the supervision of a rehabilitation M.D. run an exhibition of devices. Clients can try out and take home a wide variety of devices from electric toothbrushes to ceiling hoists, motorized wheelchairs, speech communicators, word processors, etc. Devices are dispensed and maintained by the hospital free of charge and regardless of income.

Accessibility in the Built Environment

Sweden was one of the first countries to adopt accessibility standards for public buildings. The legislation was extended in 1977 and now covers also residential construction both new and, less stringently, old buildings. All structures erected after 1977 of three floors and more in height must have wheelchair accessible elevators. New construction and renovation activity has, however, been low during the 1980's and the lion's share of the housing stock is still inaccessible. In Stockholm, for example, 95 per cent of the housing stock is inaccessible to wheelchair users.

While general accessibility in the built environment will come about only slowly, individual adaptation of the homes of persons with disabilities is made possible by the State Housing Adaptation Grant. These funds are adminstered through the local governments and are commonly used for kitchen and bathroom remodeling. In some instances installation of staircase elevators has been funded. The program is applied on the basis of need and eligibility is not means-tested. If the recipient of the Housing Adaptation Grant moves to another housing unit, he or she can apply again, if modifications are necessary in order to use one's home as independently as possible. Several recent empirical studies point to the important role of accessible housing in keeping older persons out of institutions. Some of their findings will be discussed shortly.

Transportation

Transportation services for people with disabilities are under the responsibility of local governments. As a result there is a wide variety of solutions of differing quality and costs to consumers. Unlike the United States where disability organizations have demanded equal access as a civil right with the emphasis on accessible public transportation, Swedish municipalities and disability organizations have opted for subsidized taxi cab transportation and segregated paratransit. To give an illustration, the paratransit system in Stockholm County with a total population of some 1.2 million has a capacity of over 1,000 trips per day. The service has to be ordered at least one work day in advance. The maximum cost to the consumer per month is presently l50 SEK. (1 SEK = $0.11 in 1985) There is no limit as to the number of trips per month to persons eligible for the service. In addition, about 8,000 trips a day are made by the altogether 70,000 persons who are eligible for using subsidized cabs. Subsidized cab service is open to persons who on account of physical or psychological reasons cannot use public transportation but do not need the special paratransit busses.

Travel outside one's community to other points within Sweden is made both easier and less expensive by a new state program. Persons with disabilities can apply for subsidized transportation by train, air, taxi cab or paratransit, whichever way is appropriate in light of one's disability. The total cost of the trip to the user corresponds to the cost of a second-class railway ticket. The fare of a personal assistant, if required, is paid in full by the program. Eligibility is based entirely on medical need, as certified by a physician, and is not means-tested.

As far as public transportation is concerned, the underground system in Stockholm, the nation's only one, is fairly accessible to wheelchair users but no attempt has been made to make public busses and trains accessible in Sweden.

Personal Assistance at Work and in School

Before assistance at home, our main interest here, is taken up, a brief presentation of assistance at school and at work is provided. If integration and normalization of disabled citizens are to be achieved, personal assistance services are required to overcome the obstacles presented by all environments. Two of the most strategic situations represent school and work. Here the presence or absence of assistance often means the difference between being forced to go to segregated schools and sheltered workshops or to be able to choose education and employment according to one's aptitudes and preferences.

Children and youth with disabilities can attend their regular neighborhood schools given architecturally accessible structures and personal assistance. Since l967 the law requires all new schools to be built accessible. Most schools erected before that date have remained inaccessible. In Stockholm, for example, 60 per cent of all primary and secondary schools are inaccessible. The rest are partially or fully accessible.

Since l965, practical assistance is provided to disabled children and youth of school age. Under the program an assistant may accompany the student on the way to school, help him or her to the toilet, assist with lunch or take notes. Sight-impaired students get readers, deaf school children qualify for assistants trained in sign language. A student may have his own individual assistant or share one with other students, depending on the extent of the disability. Twenty per cent of all program participants in l980 received this support during the whole school day. About 65 per cent of these children and youth had a physical disability, 8 per cent a sight and 5 per cent a hearing impairment. Eight per cent had psychological difficulties, and the rest epilepsy, minimum brain damage, autism, and social adjustment problems.

To be an assistant requires no special training. About 80 per cent are under the age of 30. Many are just a few years older than the secondary students they are working for. Most assistants are housewives. The gross pay in l980 was 5,100 SEK a month for a school day. Assistants are employed by the schools and students cannot choose who will work for them. The program's costs are shared between local and central government with the latter contributing 40 per cent. In fiscal year l979/80 737 primary school students were covered by the program at a total of cost of 39 million SEK. The cost for secondary school students was 8.3 million SEK.

There exists a similar program at the university level, the main difference being that the assistants are employed by the municipality where the university is located and all the program's costs are borne by the central state. The service also assists students in obtaining adapted housing and personal assistance in the home when they have to move from their home town to a university in another part of the country. During l978/79 costs were approximately 3.2 million SEK.

What impact have these programs had on the educational integration of people with disabilities in Sweden? The official policy is to start integration already at the pre-school level. But in some communities the municipality sends a babysitter to a child's home instead of assigning him a place at the neighborhood kindergarten. A very rough indication of the extent of school integration is provided by a 1978 survey which found that 70 per cent of all students with disabilities in 9th grade attendeded regular classes in their neighborhood schools. They were "individually integrated" to use the official jargon. The rest was divided between those who attended special classes in local schools (they were "group integrated" in the technical jargon) or went to one of the l2 state-run special schools which exist at the primary and secondary level. These institutions specialize in one particular disability and take children from all over Sweden. Their enrollment has decreased over the years as more regular schools have been made accessible and as more students have assistants.

The type of school students with disabilities attend and whether they have assistants depends to a large degree on the respective municipality. As mentioned earlier, 40 per cent of the program costs are covered by the central state. Primary education is compulsory in Sweden, secondary is not. Thus for students at the secondary level the local government is not obliged to provide assistants. Instead, many municipalities are quick to refer secondary students to one of the special state schools where all the costs including assistants are borne by the central state - even if this necessitates moving to another part of the country. The argument used by local school administrators is often that special schools have many more resources. Disability organizations, however, maintain that the social training among non-disabled peers in the regular neighborhood class room can be more important in the long run than, say, the best physical therapy.

While it is widely recognized that many students could not attend regular classes without practical help from their assistants, the program is not without critics. Some schools consider assistants as substitute teachers; students with special needs might receive less individual instruction from the teacher, if they have an assistant. Also, assistants will often do a task for the student instead of aiding the child in doing the work for him or herself. The distinction is difficult to see and to maintain for untrained personnel. Having an assistant may reduce the student's and the school's incentive for using technical aids. Overprotective assistants may isolate the student from his classmates and assistants may hinder the child's development towards more independence.

Often a student with a disability receives the necessary practical aid from classmates. This solution, however, cannot be relied upon in all instances and at all times. As pointed out by teachers, the novelty of assisting a classmate with a disability may wear off and leave the child in humiliating dependency.

It has been argued that the presence of an assistant emphasizes the disabled child's special status which in itself constitutes a segregative element. A possible solution may be to have the assistant assigned not to the student with a disability but to the whole class. Then he or she could also assist other students who need help, such as immigrant children who might have difficulties with the language. In this way also some of the above mentioned problems could be alleviated.

Assistance at work is a state program administered by the Swedish National Board of Labor and its local offices throughout the country. The Board has a range of policy instruments at its disposal intended to improve the disabled minority's opportunities in the labor market. Programs include medical and vocational rehabilitation, incentives to the employer in the form of wage subsidies, legal measures to force employers to hire workers with disabilities (very rarely used) as well as grants for technical aids, such as word processors, and modification of cars and work sites.

A relatively new addition to this list consists of the provision of personal assistants to employees. Assistance may be in the form of practical help in getting in and out of the car, going to the toilet, for arranging heavy items on one's desk, and other aid which enables the employee to perform his or her work. Sight-impaired workers can get readers, and deaf workers are entitled to sign language interpreters under this program. The person assisting may be a janitor, a colleague or somebody from outside the firm. The assistant is employed by the same employer as the person with a disability. The employer presently receives reimbursement of the assistant's time in an amount corresponding to up to 25 per cent of a secretary's average full-time salary. Thus, the employer is not encouraged to hire persons who need more assistance than two hours a day. This program is also financed by the National Board of Labor through tax funds.

Before starting with the description and analysis of in-home personal assistance for older persons and people with disabilities, the main interest of this paper, some empirical findings are presented on the question of which services are most crucial in keeping people with disabilities out of institutions. In the following some recent Swedish studies are briefly discussed that focus on older people who make up the majority of all persons requiring these in-home support services.

Swedish Studies on the Requirements of De-Institutionalization

During recent years several research reports have been produced that deal with the reasons why a given person enters an institution, and if so, which type of institution. The studies resemble each other in scope and approach and use samples of actual moves to institutions in five middle-sized Swedish communities , and in the cities of Vetlanda and Sundsvall. The surveys use interviews with both staff and older persons who had moved to an institution. One of the interesting findings is that the personnel who made the decision as to whether a client was to move to an institution often knew surprisingly little about how well the individual's own home was adapted to the person's needs and how personal assistance needs were met prior to the move to the institution. In many instances, it turned out that very simple architectural modifications or assistive devices in the client's home would have enabled him or her to continue to live at home.

Another consistent finding was that staff and patients differed considerably in their perception as to what ADL tasks the patients had been able to perform prior to their institutionalization: the staff typically considered the patients as less capable than the patients themselves. Patients in an institution are not allowed to perform many tasks which are important at home. Thus the staff's judgement was not based on actual observation. In addition, given the known effects of hospitalism, ADL capabilities, especially when not maintained through practice, and self-confidence can deteriorate rapidly. One Swedish researcher found that with older persons irreversible effects of hospitalism can in some cases be observed already after only six hours of institutionalization.

Bergström et al. investigated the consistency in the staff's decisions. The staff making placement decisions, social workers and medical doctors - the clients themselves did not seem to have a say in the matter - had considerable difficulties in differentiating between the client's need for home health care, day care or old age home placement. They felt on much safer ground when they had to determine whether the client should be moved to long-term hospital care, to a psycho-geriatric ward or to internal medicine. The researchers found that the staff considered information on the client's housing situation least important to the placement decision. Agreement was lowest on the alternative of sending the patient home supported by personal assistants.

According to one study persons moving to nursing homes had an average of 20 hours per week personal assistance in their own home prior to their move. Ten per cent of the moves could have been avoided "absolutely" or "maybe" by an increase in hours according to the staff's estimate. In the city of Vetlanda 15 per cent of the moves to nursing homes were found unnecessary, "absolutely" or "maybe", if the average of five hours a week which the patients had been receiving before referral to the nursing home had been increased to 27 hours, according to the staff. In the city of Sundsvall 50 per cent of the persons moving to nursing homes had personal assistance at home and 16 per cent of these individuals could have stayed at home, in the opinion of the staff, if their average hours a week had been raised from 9 to 22. Forty per cent of the persons entering nursing homes felt that they did not receive sufficient assistance at home.

In general, the studies face an important methodological problem in asking staff and clients under what conditions an older person could have stayed at home longer. Faced with this hypothetical question, one is not sure whether and to what extent the respondent's answer assumes the availability of certain specified services or whether the respondent bases his or her judgement on the actual state of affairs, i.e. some of the services may not be available in the community, may be understaffed, unreliable or in danger of losing financial support in the future. (Consider the following example of a community where there is no personal assistance service after office hours and on weekends. Assume that there is an older person who would need assistance also on weekends in order to continue living in his home. Suppose now that a social worker is asked whether five more hours a week of personal assistance would enable this person to avoid moving to an institution. If the response is "no", there is no way of knowing whether the social worker considers the person unable to live at home even with assistance on weekends or whether the social worker did not think of the possibility of extending the existing service to cover weekends.) This difficulty is probably most pronounced, if the respondent has not heard of or has no actual experience with the assumed services.

This points to a major shortcoming in these studies: none of them investigated the quality of the personal assistance service that some of the movers had used in their own homes prior to institutionalization; that is, while the researchers recorded the number of hours of assistance received, they failed to ask how dependable was the service in the consumer's perception; was it available during evenings, nights, and weekends; did the consumer have a say in who was to work for him or her, and with what tasks, at what hours? The importance of the quality of personal assistance services for consumers' ability of participating in their communities has been developed further elsewhere.

While the above surveys focused on persons already in an institution, Hedenius et al. followed patients who were released from nursing homes to their own homes. Under supervision of the regional hospital's nursing home in the city of Kalmar a considerable number of patients were able to return home with the help of personal assistants and minor housing adaptations.

Summarizing the findings of these studies, it seems that a considerable percentage of older persons now living in institutions could have stayed in their own homes, if supportive services had been available to a larger extent. The most important of these service was found to be personal assistance. Because of the methodology used in the investigations it seems that the results would have indicated even larger percentages of unnecessary moves to institutions, if the researchers had assumed improved personal assistance programs, especially services that are more flexible as to the hours of the day and week they are available.

III. In-Home Personal Assistance

In-Home Personal Assistance Available to Other Groups

In-home personal assistance is available not only to persons with disabilities and older people. Most Swedish households at one time or another can apply for related programs. All of these in-home services are run by the local governments' social services office. In this respect the programs for people with disabilities and older persons are integrated with services that are available to the general public and do not carry the stigma of a welfare program. Before we discuss the in-home services for persons with disabilities, the related general programs will be briefly described.

In-home personal assistance services are available to families with children when the parents are temporarily sick or otherwise unable to care for their children. While the service is intended for shorter periods, persons with disabilities can get this help for their children on a regular basis in those communities where the service exists. In 1982 some 19,263 families received a total of 1.38 million hours or 72 hours per year per family on the average.

Another group that qualifies for the service are families with sick children who normally attend day care or nursery school. The service is intended to enable their parents to get to work. Again, the service is temporary and usually very hard to get, but parents of children with disabilities can receive regular help. The service which also can be used as respite care to relieve the main providers of personal assistance may be available several hours a week, an evening or a weekend. Only a few communities have this program. More commonly, parents receive a salary from the municipality for the care of their child. In l982 some 35,450 families received a total of 1.49 million hours or 42 hours per year and family on the average under this program. This includes the hours provided by parents who were employed by their respective local government.

Finally, in-home personal assistance is available to disabled adults who need practical help in their daily lives in their own homes. At this point it might be useful to briefly outline the history of the service, because present day organization as well as shortcomings and conflicts will be easier to understand from a historical perspective.

Brief History of Swedish In-Home Personal Assistance Programs

Swedish in-home personal assistance programs date back to the beginning of the century when such services were established as small and informal mutual insurance schemes at the neighborhood level or were organized by the incipient labor movement along the lines of trade membership. These schemes were primarily intended to provide temporary relief to the family in case of the mother's illness.

With the the Social Democratic Party's rise to power in the 1930's, local governments took over the programs and expanded them. Now the service was geared more to serve older people in order to free their children - usually the daughters - from part of the responsibility of caring for their aging parents and to enable them to enter the labor market. The service was probably not meant to support senior citizens with extensive needs who lived by themselves without nearby relatives. Nor was support on a long-term basis intended. For such cases a growing number of public old-age homes were built.

During the next decades both in-home personal assistance services and institutions for older people increased in number, as the country's growing industrialization with its demand on the labor force's geographical mobility made it increasingly difficult for extended families to exist. Today the institutional solution has come under cross-fire. Although old-age homes are now being replaced by the less institutional "service houses" , older people demand more integrated housing solutions in the regular housing stock. In light of the skyrocketing costs of institutional care and the rapidly increasing population of older people these demands are beginning to receive general support.

The 1980's have been characterized by a willingness on the part of local governments to experiment with new types of in-home support services which would enable senior citizens to remain in the regular housing stock much longer than it has been possible up to now. Such services include a flexible cooperation between municipalities and county councils (responsible for health services) where regular personal assistance is supplemented by visiting medical staff as needed. Experimentation is also under way in the area of housing rehabilitation with the accessibility needs of people with disabilities in mind. Noteworthy here are accessibility legislation for new and existing structures, novel technical solutions for retrofitting existing walk-up housing with elevators, and state subsidies for their installation. There is an interest among health care planners in methods of delivering even advanced medical treatment in one's home with all the requirements such an approach would entail in terms of architecture, medical equipment, staffing, and organizational solutions.

As this very rough outline of the history of Swedish personal assistance programs shows, the services were intended primarily for older persons whose functional disabilities were not too extensive. Individuals of any age with more severe limitations - if they were able to survive in the first place - could not exist outside of institutions. When in the 1950's and 1960's the concepts of normalization and integration began to win ground, the groups that were able to leave hospitals and other institutions (or avoid them) were primarily those individuals who could benefit from advances in medical rehabilitation to such a degree that they were not dependent on personal assistance in their daily life. In Sweden today, persons with extensive assistance needs without the support of a family still have difficulties in obtaining services which would enable them to live independently in the community. For most of them semi-institutional cluster housing is the only alternative.

The reasons why Swedish personal assistance schemes are not geared to support independent life styles of individuals with more extensive disabilities can be found in the organization of present personal assistance services which has not changed materially since the 1930's. Service delivery has not been adapted to the needs of this relatively new consumer group who today can stay alive due to the medical and technological advancments of the last decades. Furthermore, the professional and hierarchically structured organization from the 1930's has not been modified to keep up with changing consumer demands for more flexibility and consumer control which would allow a self-directed, active life style in the community.

It is interesting to note that it was in California, Denmark and England that ventilator dependent post-polio patients left the hospital wards first. The primary reasons were not that these places had superior medical attention - California, Denmark, and England also were the first to start personal assistance schemes that were designed specifically for the extensive needs of these former patients. In the case of California and Denmark consumers were given the choice to become formal employers of their assistants which entails the maximum control over service delivery. This approach is in recognition of the fact that the more extensive one's need of assistance, the more important it is for the consumer to design his or her own system. In countries without such extensive and consumer-controlled personal assistance programs such as Sweden it took these groups much longer until they could leave hospital wards and nursing homes.

As an aside, the exodus of post-polio patients from their hospital wards in California in 1959 that was made possible by the introduction of the State In-Home Support Service can be considered the beginning of the Independent Living Movement in the United States. The service as well as the independent living skills that these ex-patients acquired by hiring, training, and firing their own personal assistants enabled many of them to become community organizers and disability rights advocates. This may be the reason why in the US many of the most prominent disability leaders are individuals with extensive disabilities. In Sweden, on the other hand, people with disabilities - not to speak of those with more extensive disabilities - are in the minority in elected offices and staff positions in their own organizations. The explanation, then, why consumer control in personal assistance services has not been an issue for Swedish disability advocates might simply be that they do not need personal assistance!

Description and Analysis of In-Home Personal Assistance Programs

User Statistics

The available statistics indicate that the program caters mainly to older people. More than two thirds of all users are senior citizens. In fact, twenty per cent of all persons of 65 years and older and 43 per cent of all Swedes above 79 are users of the service. In 1982 a total of 330,000 persons or 4.l2 per cent of the total Swedish population received altogether 56.6 million hours or l72 hours a year on the average. The average number of hours per person is 3.3 per week with wide variations, from two hours every other week for house cleaning up to several hours a day. Yet more than 30 to 40 hours a week are rare. In many communities personal assistants are not available after office hours and during weekends with severe implications for those persons who need this service seven days a week day and night.

The contention was made earlier that compared to, say, California's In-Home Supportive Services Swedish personal assistance was more oriented to older persons who need few hours than to persons requiring extensive assistance. The annual average cost of the service per person served by the program in Sweden was 10,300 SEK in 1982. In California the corresponding figure for fiscal year 1983/1984 is $3,100 which implies almost three times as many hours.

Administration

In-home personal assistance programs are administered by the municipal social service office at the neighborhood level. By way of an example for the organization of the services, the City of Stockholm is divided into 18 social service districts. Each district serves 20 to 30 thousand inhabitants. Each district, in turn, consists of one to two dozen subdistricts. The various social services including personal assistance are coordinated by social workers at the district office who dispatch assistants to consumers in their respective subdistricts. In this way social workers who also are supposed to make periodic home visits and assistants gain familiarity with their clientele.

Needs Assessment

The need in terms of the number of hours of assistance is assessed by a social worker at the district office of the municipal Social Services Office. The office is also responsible for case finding. In addition, hospital staff and other public and private agencies that might have contact with persons in need of the service commonly refer their clients to the program. Personal assistance services are well-known by the general public and lack of information about the availability is seldom a reason why a person in need of the program does not receive the service -with the possible exception of the growing population of older persons among immigrants.

To the knowledge of this writer, no formal operational guidelines, as used for example in California , exist in Sweden for determining the extent of an individual's assistance needs. Social workers who are responsible for assessing needs will point out that their directives are to take a person's whole life situation into account including such circumstances as family situation, housing arrangement, and life style. Apart from regional inequalities in the provision of these services, there are indications that even within a given municipality the number of hours granted varies among individuals with the same apparent needs.

Home help for people with disabilities might consist of assistance in getting up, getting dressed, personal hygiene, cooking, shopping and running errands, house cleaning, taking walks, and similar tasks. In some cases, older persons living by themselves without actual need of personal assistance will be offered a few weekly hours as a preventive measure. Through the regular contacts health problems can be monitored and counteracted but, equally important, the need for moving to a service house or other institution merely out of loneliness is reduced. This psychological problem is receiving increasing attention. One of its expression can be insecurity and fear of emergency situations. In that case a mechanical device such as the emergency call system described in one of the next sections will be of no real help. Recently the Social Service Office in Stockholm has taken the initiative of organizing small neighborhood groups of senior citizens. The way the groups start is that the assistants who usually work for a number of consumers will invite all their clients together to an afternoon coffee hour in one of the clients' home. After a few introductory get-to-gethers the senior citizens are expected to continue and expand this contact informally on their own.

Assistants

Between 80-90 per cent of the assistants are female, usually middle-aged housewives who choose working hours that suit their families. Four per cent are full-time employed, 51 per cent work regular part-time schedules, the remaining 45 per cent work on an hourly basis as needed. About fourteen per cent of all home help assistants are relatives who are employed by the city to work for spouses, parents or children who have disabilities. Assistants are paid the lowest municipal wage, presently 38 SEK an hour. Of the 70,000 assistants who worked in Sweden during l980 about 30 per cent had received some training, usually a two-week course. The question of workers' training will be taken up again below.

Costs

The municipal in-home programs' costs are shared between local governments and central state. The latter contributes 35 per cent of the costs. Despite some control over the enforcement of the pertinent regulations by the National Board of Welfare, decisions on type and quality of service rest to a large degree with the local governments. As a consequence there are wide regional variations in service delivery depending on local government finances and political majority in the city council.

In 1982 expenditures for the service on the national level amounted to a total of 3,963 million SEK . This figure corresponds to about $445 million at the 1985 exchange rate. Divided by the total Swedish population the amount is 477 SEK or $54 per capita. These statistics demonstrate the wide acceptance and the broad political base for the service among the Swedish people. For comparison, in fiscal year 1983/84 expenditures for California's In-Home Supportive Services, the oldest and one of the most extensive programs in the United States, came to a total of $297 million which amounts to $12 per capita, if divided by the total population.

The cost of the service to users varies widely among municipalities. In a few communities the service is free. In others, fees are charged per hour with a maximum monthly amount. The ceiling is often means-tested and may go up to 800 SEK a month in some cities. In other schemes all users pay the same flat fee regardless of the number of hours of service rendered. In line with the stagnating Swedish economy during the 1980's local government finances are strained with the result that consumers' fees are on the increase throughout the country.

County Home Health Services

Where disability is accompanied by chronic medical conditions or where assistance is required during the night, the responsibility for that part of the service rests with the counties. In some counties, persons with such needs and without support from their families will be offered a bed in a nursing home, since no programs exist which can deliver that type of assistance.

In other counties assistance outside regular working hours is delivered by the municipal home help staff, complemented by a visiting nurse where necessary, and the cost is borne by the county. In some communities the county sends its own staff, usually nurses' aides, to one's home for the more medically oriented tasks while municipal home help assistants take care of the non-medical personal and domestic chores. The solution seems awkward. Besides the obvious difficulties in defining tasks and coordinating the two agencies' staff, consumers complain about the constant flow of different people through their home disturbing their privacy. The distinction between non-medical and medical tasks is not uniform throughout the country. Some local governments - they tend to be characterized by high income, low tax rates and conservative rule in the city council - will define personal tasks such as helping the consumer getting dressed in the morning as medical in nature. The pay-off to these municipalities of this "medicalization" of personal assistance are lower expenditures, since the county is responsible for medical tasks.

In several counties cash payments are made directly to the consumer who turns over the money to his or her family or a person living in the home. (This practice is called ."object employment", the worker is employed to work only for one person, the "object", as opposed to working in the regular municipal home help force where assistants work for any consumers they are assigned to.) In 1982 there were about 2,000 persons who received between 200 and 1,200 SEK per month tax-free from their county for working for a household member. To put this amount into perspective, 38 SEK is presently the lowest municipal hourly wage. In a few undocumented instances some counties pay market wages to the family members who care for the "patients", as the consumers are called under this scheme.

Escort Service

Swedish communities by law have to provide paratransit services. In contrast to other countries, such as the United States, no effort has been made to make public transportion accessible. Usually there is door-to-door service and the user is assisted in negotiating architectural barriers such as steps. Yet many will need more assistance when outside their home. Recognizing this need a few municipalities have recently started escort services.

The escort is a municipal employee who is usually already working for the social service office as an attendant and who accompanies and assists the consumer while shopping or pursuing a leisure time activity outside the home. In Stockholm, for example, users of the regular home help service with more extensive functional disabilities are eligible and entitled to 15 hours of service per month for a maximum of three outings at five hours each. The service is considered a complement to the regular home help and there is no additional cost to the consumer. The escort service has to be applied for several working days in advance. While the service recognizes an important need, some users criticize the fact that they have no control over who will accompany them on an outing and that there is no room for spontaneous decisions. Some consumers refuse to utilize the program and prefer to make their own arrangements with people they know.

Evening Patrols

Swedish central and local governments have adopted the aim of supporting the disabled and elderly population in staying out of institutions as long as possible. The belief in the higher quality of life in the community has been aided by the now widely accepted cost advantages - especially in the light of the predicted continued growth in the population of older persons.

As already noted, in many communities municipal personal assistance is not available after office hours or on weekends. Thus persons in need of more extensive assistance who cannot rely on relatives or cannot afford to pay workers out of their own pocket have to move to an institution. During the last few years several cities have begun to remedy this situation by providing services under a program called "evening patrols". The service consists of teams of two municipal employees each who travel by car or taxi from one consumer to the next according to a pre-arranged schedule. The patrol assists with going to bed and preparing for the night.

So far the service has been adopted by some cities on an experimental basis, mainly for older persons. The program has been critized by younger consumers who point out that it is inflexible and unreliable, since a delay at one point in the schedule will affect all subsequent users. The common criticism, which applies to most Swedish personal assistance programs, is that consumers have no control over the staffing of this service and often will not know who will work for them on a given day. Also, recent articles on personal assistance in the daily newspapers took up the disadvantages of the service citing the example of an older man in Stockholm who has to go to bed at 5 p.m. every day of the year - even during summer when the sun is up until 10 p.m.

Emergency Call Systems

Another development intended to decrease the need for institutions consists of installing devices in the user's home through which assistance can be summoned. Senior citizens who live by themselves but also younger individuals often express their fear of an unforeseen emergency which would leave them helpless and unable to call for assistance. This insecurity is a reason why many older persons without actual functional disabilities move to institutions.

There are various devices and organizational solutions which can be grouped into so-called active and passive systems. One active system, for example, is a small wrist watch-sized transmitter which allows the user to communicate with a manned staff room via microphones and loudspeakers set up at strategic points in the user's home. An example for passive systems might be one where a municipal employee makes periodic phone calls to check whether the user is well. Another example is a device installed in the user's home that automatically triggers off an alarm in a staff room, if no electrical appliance in the home is used for a predetermined number of hours.

Over 6,000 apartments in Sweden are connected to active systems and 900 which are hooked up to passive systems. The experience with these emergency systems so far is inconclusive; many older persons do not feel safe with these devices and prefer human contact. A recurrent comment on the part of municipal administrators is that technical solutions can substitute for staff to only a certain degree and that the organizational arrangement of who will respond to an emergency call is of paramount importance.

The apartments connected to a staff room via an emergency call system are either located within or in close proximity to service houses. As more people living in the regular housing stock are to have access to emergency call systems, other solutions as to the geographical location of staff rooms and organizational arrangements have to be developed.

Fokus or Cluster Housing

Cluster housing under the name of Fokus housing is internationally the best known Swedish effort for keeping people with extensive need of personal assistance out of institutions. This solution has been in existence in Sweden for more than 15 years. The concept was first realized by the Fokus Society under Prof. Brattgard in the late l960's. The original 280 Fokus apartments are located in 12 Swedish cities. The common pattern consists of 10-15 special apartments dispersed throughout one large apartment complex of perhaps 50 or more units. In this sense the tenants with disabilities are geographically integrated. Fokus apartments are designed for the accessibility needs of wheelchair users. The units are connnected via intercom to a staff on duty 24-hours a day. In the original concept the apartments were mainly intended as a half-way house solution. Individuals with extensive disabilities coming from parental homes or institutions could in these units acquire the skills necessary for a life in regular housing.

Through the political efforts of the Swedish disability organizations and the Fokus Society Swedish local governments in l973 were charged with the legal responsibility of providing that type of housing and services. Since that date all Fokus units are operated and financed by the respective municipality they are located in. Up to l985 an additional 720 apartments have been built throughout the country that differ somewhat from the original Fokus concept. Cluster housing is no longer referred to as Fokus but as "boendeservice" which might be translated as "housing with service". To the disability organizations that propagate for more boendeservice apartments the term "Fokus" has institutional connotations and they claim that there are significant differences. Boendeservice in contrast to Fokus apartments do not share common bathing, laundry, kitchen, and dining facilities. The units consist of fewer apartments now ranging from 5 to 10 instead of 10 to 15. This decrease in numbers was to further improve the geographical integration of the units in the neighborhood and to avoid any resemblence to an institution. The basic principle, 24-hour access to staff from a nearby common staff room, remains the same.

In Stockholm boendeservice apartments are built and operated by municipally owned housing companies within the regular housing stock. The additional construction costs of the units due to their larger-than-standard floor plan, estimated at an average of 90,000 SEK per apartment, are covered by the State Housing Adaptation Grant mentioned earlier. The staff based in a large apartment within the apartment complex is under the direction of the home help service of the city's Social Service Office. The cost of the service to the consumer is means-tested but does not presently exceed 440 SEK a month. The tenants of the boendeservice units are selected by the city's Social Service Office who also leases the apartments to the tenants.

Despite the 15 year old history of cluster housing in Sweden little has been done in the way of critical evaluation. This fact can in part be explained by the overwhelming lack of independent living housing alternatives; as long as for many individuals a bed in a nursing home is the only housing alternative, consumer organizations, service providers, and researchers seem to be less inclined to critically analyze and evaluate boendeservice's limitations.

Though most of the residents seem satisfied with their living situation, frequent dissatisfaction is voiced in private. Complaints about the high turnover among the staff, the frequent changes of workers whom a resident is exposed to, and the limited input in the decision of who is to assist a given tenant are similar to those raised by individuals who use the regular municipal personal assistance service in their homes outside of cluster housing settings.

Among the shortcomings specific to the cluster housing solution, as cited by residents, is the possibility that assistants can be summoned to work for another resident whose momentary needs are considered more pressing. The urgency of tenants' needs is assessed by the staff. Thus, during morning hours the staff can seldom stay during one tenant's entire routine without interruptions (especially, if some workers have called in sick and no substitutes have been found which happens quite often). Such interruptions can cause considerable delays and as a result, residents find it difficult to plan their day. Since staff members are often forced to set priorities in how to allocate their limited time among the residents' competing needs, tenants have developed individual coping strategies. With time many residents have learned to assess the probabilities of receiving assistance for various tasks at a given time of the day and week and to adjust their needs to the staff's schedule. Another response is to try to gain a competitive edge over fellow residents by developing a pleasing, non-offending attitude towards the staff.

There are recent developments which point to future changes in the boendeservice scheme and its prominent position among Swedish housing alternatives. During the last few years some of the residents with more extensive disabilities in Stockholm's older cluster housing units have successfully negotiated for their own personal attendants who are not connected to the unit and who come in the mornings for the entire morning routine. During the rest of the day these residents rely on workers from the central staff room as before. Residents who managed to get these personal assistants reportedly experience the change as a significant improvement in their quality of life. They report increased self-confidence gained from a feeling of being in charge and able to plan their day. It would seem that these persons could move out of their cluster housing unit, if they managed to develop a satisfactory back-up and emergency system.

A handful of consumers in Stockholm and neighboring communities have gone a step further. They live in regular housing and recruit, train, and schedule their own assistants. The workers are employed by the municipal Social Service Office who administers payment of wages, tax withholding, and all other employer's tasks. The solution has not received any publicity. Consumers with such arrangements have been reluctant to talk about it, apparently out of the unfounded fear that the solution is not completely legal and might be taken away from them, if the news would spread.

Social workers have not made any attempts to encourage their clients to find their own assistants. One reason might be that it is the social worker's job to perform these functions and the thought of informing clients of the possibility of finding their own assistants might not have occurred to them. There are also institutional hinders to this solution. Most consumers who have such arrangements need part-time workers, since they do not have enough hours for the 8-hour shifts of full-time assistants. Part-time work, however, is not looked upon favorably by the unions who demand full-time positions in their drive to upgrade the status of workers. Social services offices are reluctant to put new part-time workers on the payroll also for economic reasons, because they have to first find work for their full-time employees who receive fixed monthly salaries regardless of the number of hours worked. Further, some social workers when asked about this solution do not see any advantage for the consumer in it. They will also point out that in their opinion only very few of their clients have an interest in or would be capable of running such a system.

Assessment of Personal Assistance Services

Administrative Compartmentalization of Personal Assistance Service

Conceptually, personal assistance services consist of practical help with all the tasks which consumers cannot perform by themselves due to their disability. These tasks may range from getting up in the morning and needing assistance with bathing, toiletting, and dressing to household chores such as cleaning, shopping and preparing meals. Similar help might be required at work, in school or wherever else one may be. Assistance might be needed with transportation, moving about town, making phone calls or running errands. Depending upon the nature of the disability a reader or sign language interpreter may be required.

While consumers may not see a difference between the need for practical help, say, in getting to the toilet at home and at work, in Sweden the responsibility for funding, administration, and recruitment of workers in the two situations will be entirely different. Assistants at work are under the jurisdiction of the local offices of the State Board of Labor Market, whereas in-home support is the responsibility of local governments. In some communities, as mentioned above, a difference is made between household chores (under the responsibility of local governments) and personal hygiene (sometimes considered a medical task and as such the charge of the respective County Council). Consumers eligible for the escort service have to apply to a special section within the municipal Social Service Office. If they cannot use public transportation for that occasion, they also have to order the paratransit service at the County Council's paratransit office. The escort or any other municipal worker for that matter is not permitted to drive the consumer in the consumer's car.

To the consumer the compartmentalization of personal assistance services has severe consequences. For one, the agencies involved have their own eligibility criteria and periodic eligibility checks; they answer telephone calls only during certain hours of the day; services have to be ordered at least one and sometimes several work days in advance. Thus, the individual consumer has to spend quite a number of hours each month in handling these contacts. Consumers who do not have the time or energy required for these adminstrative tasks or do not have the capability or possibility to plan their life so far in advance, for example for health reasons, cannot utilize the services to the degree they would need them.

Consumers are often dependent on not only one but several services. With each additional service used, the probability of delays or breakdowns in the total system increases rapidly as problems can arise in any link of the chain. At a recent conference on housing and services for people with disabilities in Stockholm the national chairperson of a Swedish disability organization told the audience that during the previous week she had lost two days of work. Her cluster housing facility had been short of staff and when the paratransit driver arrived to pick her up to work she was still in bed. The transportation service that has to be ordered at least one day in advance could not wait for her. The example illustrates the vulnerability of the consumer who is dependent on the smooth interaction of services provided by several agencies. Regarding our example, to many consumers the ideal solution would be that the worker who assists them with their morning routine also drives them to work. Since this arrangement would be considerably less expensive than the paratransit service, the solution would even allow subsidization of the consumers' use of their own car and still be advantageous to the tax payer.

The most far-reaching consequence of the fragmentation of services is the sense of alienation and powerlessness which the division of responsibility for the programs breeds in consumers. Of all services which determine the consumer's quality of life personal assistance is probably the single most important one. To split up personal assistance into many different compartments over which the individual has no control may make it difficult for the consumer to see his or her life as a unity. Under such circumstances it is difficult to perceive oneself in charge of one's life.

Economics of and Obstacles to De-Institutionalization

In Sweden one of the expressed aims of assisting older people and persons with disabilities in their homes is to reduce the demand for costly institutional care. A bed in a long-term ward excluding food and medically related expenses cost approximately 480 SEK a day in l982. This cost consists mainly of labor costs for personal assistance and capital costs for the physical plant. In comparison, the cost of one hour home assistance to Stockholm City was 60 SEK including all employer's costs and admininstrative expenses. Thus, compared to the most expensive institutional alternative it pays to provide home assistance, as long as the need does not exceed approximately eight hours a day.

This admittedly rough calculation nevertheless reflects some of the economics involved. Administrators are quick to point out that it is a person's whole life situation and not economic considerations which will determine where a particular individual will end up living. The irony is, however, that many more individuals with disabilities - among them individuals in their twenties - as well as older people could leave hospital wards and other costly institutions, if planners would follow the economic criterion. The number of persons presently put up in nursing homes who could live in their own home with several hours assistance a day has been estimated at 7,000 in Sweden.

There are several reasons for this obvious waste of human and monetary capital. As has been pointed out already, in many communities the services available cannot support persons who need personal assistance outside regular office hours. Often, it seems, the relationship between insufficient in-home personal assistance and the resulting need for institutional care is not properly understood by planners in the respective government agencies. Such an understanding would require closer cooperation between various levels of government. There are, however, obstacles to such cooperation: In-home assistance is paid by the city, hospital care by the county. Politicians at the municipal level are not willing to suggest a raise in local taxes to finance a larger municipal assistance program - a program which would save money for the county. Only a few counties have started subsidizing municpal in-home support services.

Another reason why many persons cannot leave insitutions or have to move to institutions is the shortage of accessible housing. While legislation requires wheelchair accessibility for all new residential construction and, considerably less stringently, for renovated older structures, the number of accessible units is still severely limited. In Stockholm, for example, 95 per cent of all housing is inaccessible to wheelchair users. Thus, the probability that a person who acquires a disability is already living in an accessible structure is small. Moving to a newer and accessible building is made difficult and time consuming by the tight housing market in the larger cities. Recently, central and local government subsidies have become available that cut in half the owner's cost of retrofitting multi-family structures with elevators. Unlike the State Housing Adaptation Grant mentioned earlier, these subsidies are available regardless of whether any persons with disabilities are presently occupying any of the apartments in a given building. Apartments are the prevailing form of housing in Swedish cities. Since lack of elevators is one of the most important reasons why people with disabilities have limited choices in the housing market, the program holds great promise for allowing people to stay in their own home when they become disabled. At the present, the subsidy program is still too new to have any significant impact on current de-institutionalization efforts.

Professionalism and Limited Consumer Input

Swedish personal assistance programs and social services in general are characterized by a trend towards professionalization. The unions are on record for pushing for upgrading of assistants' status and an important aim is full-time employment. While in l980 only four per cent of all Swedish municipal personal assistants were employed full-time, in l982 this figure was already seven per cent and can be expected to continue to rise. At the same time the number of persons who are employed by the municipality in order to work for a disabled member of their family, living in their household or not, has been decreasing from 24 per cent of all workers in 1970 to 14 per cent in 1982. According to one observer, there are municipalities where today not a single assistant works for a relative. This trend has been ascribed to efforts on the part of unions and local governments to upgrade the professional status of their staff.

It would seem that an increase in full-time employment will limit the total number of employees. In particular, work opportunities for students and other typical part-time workers will decrease. Many younger consumers of personal assistance prefer the flexibility in working hours and attitudes that often characterizes these workers.

Another step towards more professionalism among personal assistants consists of the demands by the unions and the organizations of people with disabilities for more workers' training. The unions expect higher status and, ultimately, better pay (although at present more training is not rewarded by higher wages). The large disability organizations support these demands in the hope for better quality service.

A straightforward way of improving the quality of the service would seem to be to raise workers' wages; more applicants would compete for a given number of positions and selection criteria could be raised. The problem remains of whose criteria would be used. For personnel adminstrators at the municipal social services office formal qualifications such as health care related courses and work experience in institutional settings are important selection criteria. Yet such qualifications are questioned by many experienced users of personal assistance who live outside of institutions. Younger consumers will point out that the courses offered by local governments are geared towards assisting older persons who make up the majority of all consumers of personal assistance. This training, it is claimed, instills attitudes in the workers towards their clientele which younger consumers find negative. The same goes for work experience in institutions. Signs of attitudes that do not support a sense of self-direction and self-worth among consumers can be found in some of the language around personal assistance. In many regions workers, for example, are commonly referred to as "home samaritans". The Good Samaritan, according to the biblical account, saved a half-dead, beaten up robber victim whom he happened to see at the wayside from a certain death. Thus the term seems to imply that the consumers' life and well-being is completely dependent on the charitable instinct of some chance passers-by. Further, the work of the "home samaritans" is commonly called "vård", "omsorg" or "att ta hand om" -terms that suggest passive dependence and being taken care of. The view of people with disabilities conveyed in this language is incompatible with the goal of full participation and equality.

Many users of personal assistance feel that the less institutional work experience and health care-related training assistants have, not to speak of courses in disability psychology offered by some social service offices to their workers, the easier it is for the consumer to direct his or her assistants. If somebody is to be trained, many consumers contend, it should be the users of personal assistance. To motivate and direct another person takes some psychological and educational skills which have to be learned. Besides, the turnover rate among assistants, about 30 per cent per year in Stockholm , is much higher than among consumers which makes investments in users' training more meaningful. Innovative and successful methods for training consumers are available.

As a selection criterion, then, many consumers would suggest actual job performance. Since personnel administrators, however, seldom have the opportunity to observe workers in the home of consumers, the performance evaluation would have to be done by the individual consumer. Such an approach as well as the notion that it should be the consumer who trains and supervises his or her assistants is, however, contrary to the aim of upgrading workers' professional status.

The move towards higher forms of professionalism finds another expression in the recent introduction of assistant teams. In Stockholm, for example, in several districts assistants work in groups of four to five. Each morning the team starts the day by meeting in their staff room, usually an apartment rented by the city's social service office in the neighborhood of the team's clients. During these morning meetings workers discuss and distribute among themselves the tasks for the day. The rationale for this innovation is to improve the assistants' working conditions by providing them with a place of their own for meetings, meals, and support from their colleagues.

The solution has not gained popularity among consumers for the following reasons. For one, staff meetings at 8 a.m. for 20 minutes or more mean that consumers cannot start their morning routine before 8:30 a.m. which is too late for people who work or have children. Also, some consumers fear that when assistants discuss their work load with each other, details of the clients' private lives will be exchanged. About 20 to 30 per cent of the assistants' working hours are spent on activities such as staff meetings, training, travelling to consumers' homes, and rest periods.

Another example of professionalism are tasks of therapeutic nature which the Social Service Office charges the workers with. Thus, assistants are to "activate" consumers. To "activate" usually means that assistants are to perform only those tasks which the consumer cannot do himself or herself. In a recent report on the quality of personal assistance in Stockholm conducted by a disability organization a common example of this approach was cited. Workers will dust off the upper corners of pictures on the wall and motivate consumers to do the lower corners which are in reach for a seated person. To many consumers the issue in using assistants is not only that they need help in getting chores done which they cannot do themselves; many tasks which the consumer might be able to perform himself will take much time and energy which can be spent on other activities, say, employment. The choice as to how to spend their energies, consumers contend, should be theirs. A similar expression for what might be termed paternalism is a recent decision by the Stockholm Social Service Office that prohibits attendants from buying alcoholic beverages for their clients.

A list of regulations governs the various tasks which assistants are allowed to perform in a consumer's home. For example, in Stockholm a worker is to clean only the consumer's bedroom, bathroom, kitchen and living room but no other area. Linen or carpets may not be laundered. No windows above the ground floor may be washed for safety reasons. For many consumers house cleaning is done every other week on a fixed day regardless of unscheduled needs. There is much uncertainty around these written and unwritten rules which tends to cause confusion and insecurity among users of the service.

The regulations not only limit the type of tasks which the workers may perform, they also specify the assistants' working conditions. The consumer's home is somebody else's work site. Thus, a supervisor at the city's Social Service Office may inspect the consumer's home in order to check, for example, whether the bed is of the right height and accessible from at least three sides. The regulations are the result of periodic negotiations between the city administration and the labor unions. Individual consumers or their organizations have no part in these decisions.

The area where the lack of consumer input is felt most is the decision of who will work for a particular user of the service. Many consumers will contend that the work consists of very intimate moments and constitutes a close social relationship during a large part of the day. Also, the consumer, by the nature of the work, is forced to expose his or her everyday life and private sphere to another person. Under these circumstances having an outsider, a social worker at the local Social Service Office, decide who will work for a particular consumer can be experienced as a humiliation. The assumption that any assistant can work for any person, the explicit rule especially in cluster housing units, amounts to a denial of an individual's uniqueness as a human being. Implied in this rule is the attitude that all people with disabilities are the same, as if their disability was the only important aspect of their person. (This stereotypying mechanism when applied to other groups, to a different race or sex, for example, is commonly called racism or sexism and considered a form of discrimination. When directed against people with disabilities the Independent Living Movement refers to this attitude as "handicappism".) As one consumer, a woman, stated at a recent conference on cluster housing, "it is only after I moved to boendeservice that I no longer have control over which men enter my bedroom".

A repeated complaint by consumers is that social workers, out of an alleged misunderstood professionalism, will see to it that no personal attachment develops between client and worker. For that reason consumers often hesitate to indicate a preference for particular workers, since they fear that as a result other workers will be assigned to them.

There is also a very tangible and practical aspect to this issue. Individuals with extensive disabilities have specialized needs that differ from person to person. Each time a new worker comes, he or she has to be instructed and trained by the consumer in work routines that might be unique to a particular consumer. In this way a morning routine that will take, say, three hours with a trained worker might take up to one or two hours more. Apart from the aggravation and inconvenience of being awakened by a stranger who has to be instructed, the delay will affect the consumer's ability of leaving for work at the scheduled hour. Since turn-over among the municipal employees is very high - one consumer in Stockholm is on record as having had 67 different workers within a single month - the uncertainty about at what hour a person will be able to leave his or her home in the morning might be a contributing factor to the high unemployment rate among persons with extensive needs of personal assistance in Sweden.

To workers the presently high turnover rate and resulting frequent changes in assignments are not satisfactory either. They often report discomfort when they are sent to new and unknown persons whom they have to assist with intimate tasks such as personal hygiene.

In summary, there is a clear conflict between workers' attempts to upgrade the professional status of their work and consumers' interests in obtaining more control over service delivery and quality. The question then is how both quality of personal assistance and worker satisfaction can be improved without turning the work into a profession.

Decentralized Financial Responsibility and Regional Inequality

As stated above, the responsibility for providing personal assistance services rests with local governments whose expenditures for the service are subsidized by the central state. Since the services provided in a given community will depend on awareness of needs, political priorities and municipal finances, extent and quality of personal assistance vary widely among municipalities. As a result, persons with disabilities depending on these services face severe restrictions in their geographical mobility unexperienced by their non-disabled peers. Within the County of Stockholm, for example, an area consisting of some 24 separate municipalities, individuals with needs of personal assistance during the night and on weekends who cannot arrange these services through their families or by hiring assistants with their own money, are able to live in only half a dozen communities without running the risk of having to move to a county institution.

In this regard then the decentralization of social services to the local level, as prescribed by Swedish legislation, has been detrimental to the efforts made by people with disabilities in becoming equal participants in society. In the view of this writer financial responsibility for personal assistance has to be as centralized as possible, that is, be paid for in toto by national income tax revenues in order to avoid regional inequities. A possible vehicle for such a transfer at present would be an expanded National Disability Allowance (handikappersättning). The program which was described above is meant to compensate persons with disabilities for the additional cost of living incurred as a consequence of their disability.

At the same time, this solution would allow the control over the service to be as de-centralized as possible; consumers, if they so wished, could administer the funds necessary for hiring their own assistants themselves or turn over the money to the city's social service office or some private agency that could provide the service. The choice would always be the consumer's.

Funding personal assistance at the central state level through the present disability allowance would also keep more persons with disabilities out of costly institutions. As was pointed out in previous sections, the present division of financial responsibility for personal assistance and health care between municipality and county gives financial rewards to those municipalities which provide a minimum of personal assistance services; persons who cannot manage on such a minimum will have to be referred to nursing homes which the county pays for. With central state funding for personal assistance shuffling people with disabilities around would come to an end, since consumers would have the means to purchase the services anywhere.

Limited Choices

In Sweden the alternatives for persons with extensive disabilities in housing and personal assistance are still severely limited. The options for people needing extensive personal assistance are living with their families, in nursing homes, using the municipal personal assistance service while living in the community, and cluster housing.

In communities with poorly developed personal assistance programs, as developed above, people with disabilities are often forced to get services from their relatives after office hours and on weekends. When parents or spouses are no longer capable of providing the necessary practical aid, there is often no other place to go but the nursing home - especially, if the person has never had the opportunity of acquiring the skills of living on his or her own. Nursing homes, the Swedish disability organizations contend, should never be considered an acceptable housing solution for people who do not have to live there on medical grounds. Despite public statements by Swedish politicians on their committment to de-institutionalization and on its economic advantages there are still people with disabilities living in nursing homes, often people in their early twenties, purely for lack of appropriate personal assistance services in their communities.

Given these choices, or rather lack of them, the advent and development of cluster housing has been embraced by public officials and consumer organizations alike as the solution to the housing problems of persons requiring extensive personal assistance. The number of persons aged 20-65 in need of this arrangement has been estimated at some 10,000 which, for comparison, is 0.12 per cent of the total Swedish population or more than two thirds of all Swedish wheelchair users in that age bracket. The estimate made by one of the most powerful Swedish disability organizations has gone unchallenged. While the estimate may be correct as far as the number of persons is concerned who are in need of more extensive personal assistance, the conclusion that these assistance needs have to be met in cluster housing arrangements only must be considered unfounded.

The cluster housing solution, some consumers point out, implies that people with disabilities have to move to where the services are and not the other way around. The result is a severe restriction of the geographical and social mobility of people with disabilities in need of personal assistance which profoundly limits their possibilities for full participation and equality. The term "koncentrat" (concentration) commonly used in the jargon of the Stockholm Office of Social Services for cluster housing is a good description of the geographical limitation and the semi-institutional character of this solution. Cluster housing is presently not available in all communities and in all neighborhoods. Nor does it allow tenants to live in any other form of housing than apartments in multi-family structures. Also, unlike in regular lease contracts tenants of boendeservice units are not free to swap apartments with anybody they choose. In Stockholm's tight housing market exchanging apartments is an easy and popular method of adjusting one's housing to changing needs. For tenants of boendeservice apartments, however, exchanges are possible only with persons who qualify for boendeservice according to the Social Service Office's criteria.

STIL: Consumer Reaction in the Form of An Incipient Independent Living Movement

As a result of a seminar on the Independent Living Movement in Stockholm in December 1983 Stockholm's Independent Living Group (STIL) was formed with the objective of increasing the number of personal assistance alternatives for persons with extensive disabilities. While STIL does not deny the advantages of boendeservice over institutions or parental homes, its members argue that boendeservice as the only solution cannot satisfy different, individual needs. Persons with extensive disabilities, according to STIL, despite their common need of personal assistance are individuals with different personalities and social and economic background who have the same right to find their own way of living as their non-disabled peers. The flexibility implied by this right, STIL members claim, depends on two requirements:

not linking housing and services into one bundle as in cluster housing
municipal or, preferably, central state personal assistance allowances directly paid to
the consumers to enable them to purchase the services from whomever they choose.

Personal assistance programs that incorporate these two principles, STIL members contend, enable individual consumers to custom-design their own assistance system by making all decisions as to staffing, scheduling, training, hiring, and firing. In order to demonstrate the feasibility of such solutions STIL is preparing a pilot project where consumers of personal assistance will function as employers of their assistants. STIL is currently negotiating with the City of Stockholm for an agreement where the participants in STIL's project will receive the amount that the city presently spends on the respective individual's personal assistance. The funds will then be administered by the participants either individually or in form of a cooperative. Participants will have the choice of taking on the administrative tasks associated with being an employer or charging the cooperative with that task.

Since STIL's membership consists of individuals with extensive disabilities facing very limited housing choices, the organization's initiative is seen mainly as a protest against cluster housing. While boendeservice has its rightful place among the present limited housing and personal assistance alternatives in Sweden, these recent developments indicate that consumers there have begun to question the monopoly position this solution has had for so long.

The hypothesis is here suggested that when the number of cluster housing apartments in a given community increases beyond a certain level relative to the number of persons in need of personal asistance, the only other alternative for many, a nursing home, ceases to serve as the sole reference point and other imaginable solutions are explored that promise more degrees of freedom. Perhaps it is no coincidence that STIL was founded in Stockholm which is the city with most cluster housing apartments per capita in Sweden, presently 150 apartments in a total population of some 600,000 inhabitants. The most active members in STIL are residents of boendeservice units who expect considerable improvements in their whole life situation from moving out and administering their own assistance service.

As an aside, the above argument might explain why the Fokus scheme seems to face less criticisms in the Netherlands than boendeservice in Sweden - despite the fact that the Dutch cluster housing solution has retained more of the institutional characteristics of the original Swedish Fokus scheme than boendeservice. People with extensive needs of personal assistance have apparently considerably fewer alternatives in the Netherlands than in Sweden which can be shown by some rough calculations.

The number of persons in the age bracket 18 to 65 and in need of extensive personal assistance has been estimated at roughly 10,000 in Sweden and 15,000 in the Netherlands. In the Netherlands, as of 1984, approximately 1,300 persons or 9 per cent were housed in residential centers such as Het Dorp (an entire village of 400 inhabitants in need of personal assistance); 200 or a little more than 1 per cent lived in Fokus units; and the remainder, about 13,500 or 90 per cent, stayed either in nursing homes or had to rely entirely on family for assistance, since there is no personal assistance program for persons living outside residential centers or Fokus. In Sweden residential centers such as Het Dorp and its smaller versions are unknown and would be unacceptable to disability organizations and policy makers. About 1,000 persons or 10 per cent live in cluster housing; some 3,000 or 30 per cent live in nursing homes ; the remaining 6,000 or 60 per cent live at home with personal assistance provided by municipal home helpers. Since in many communities such assistance is not available after office hours, an unknown percentage in this group has to rely on supplemental assistance from family members or other sources.

Fokus housing in the Netherlands offers comparative advantages which help to explain its popularity. In a very tight housing market and without national accessibility codes in residential construction it is apparently very difficult to secure accessible housing in the Netherlands which makes the relatively spacious and subsidized Fokus apartments very attractive. Also, Fokus housing with ADL-assistance paid for by state insurance is financially considerably more attractive than the residential center alternative where the resident is left with a mere pocket money or living at home in the regular housing stock where assistance has to be provided by family members or has to be purchased with the consumer's own money. In Sweden boendeservice offers no such financial incentives.

Under such circumstances there is no way of knowing how much of the Fokus scheme's popularity in the Netherlands is explained by its intrinsic qualities and how much is merely due to the overwhelming lack of better alternatives tolerated by a weak consumer movement.

STIL's initiative has met considerable interest and also initial resistance - the latter not surprisingly from the established disability organizations who are strongly committed to the boendeservice model. In STIL's view one of the reasons, why cluster housing has become the main solution propagated by these organizations, is the fact that Swedish disability advocates traditionally have often been persons who do not need personal assistance or have no disability themselves and who therefore lack a first-hand understanding of the importance of personal assistance for a self-directed life. STIL has recognized this limitation and does not permit persons without need of personal assistance on its board.

Interestingly, much of the initial resistance has come from the political left who opposed STIL's proposed models of consumer control as "individualistic". The argument is that personal assistance is the responsibility of and should be administered by public bodies under full control of the democratic process instead of private and perhaps even profit-oriented interests. In this position STIL's initiative is seen as part of the recent "privatization" wave which proposes private and often profit-making solutions for services, such as health care, which in Sweden have traditionally been considered to be in the public domain. STIL members respond that they do not see themselves as helpless hospitalized patients who need protection from private profiteers but as healthy, self-directed individuals living in their own home and pursuing an active life who know what is in their best interest. STIL also points out that it must be in the interest of all forms of government that some decisions remain in the private sphere and are not subject to public control, namely, decisions about such mundane everyday tasks as when and how to go to the toilet. The attitude of critics on the left towards STIL has improved considerably after it was announced that participants in the pilot project, if they so wish, will form a consumer cooperative which functions as the employer of their assistants.

Swedish unions are known for their reluctance to support de-institutionalization fearing that they cannot protect their members' interests outside of large institutions. Thus, they have been critical of STIL's proposals arguing that personal assistants could easily be exploited, if employed by individual consumers. Today, due to pressure from the unions municipal Social Service Offices have issued a multitude of rules that regulate in detail the tasks assistants are to work with. STIL contends that in the consumer-assistant relationship, made possible in the STIL-project, both have equal opportunities for and an interest in establishing a satisfactory working climate where both parts together can reach agreements. In this way, assistants too can choose whom they want to work for in contrast to the regular municipal home help service or boendeservice where they can be ordered to go to anybody. More than 10 per cent of STIL's membership consists of boendeservice workers who support STIL's initiative in the hope of improving their own working conditions through the pilot project.

One of the most persistent arguments against STIL's personal assistance initiative is the contention that not many persons with disabilities have the ability to manage their own personal assistance. These doubts are most often advanced by social services professionals and by non-disabled functionaries of disability organizations some of whom have called the proposed STIL project "elitist". STIL's reply is that even if not all consumers are willing or able to administer their own personal assistance service, this, in itself, would not constitute sufficient grounds for hindering those who are able and willing from doing so. In most other areas differences in needs and aptitudes among citizens are recognized. In fact, insisting that all consumers of personal assistance should have the same system, STIL contents, is reminiscent of the stereotyping attitudes which people with disabilities have been exposed to for so long. By assuming that all consumers of personal assistance have the same needs, abilities, and preferences this type of prejudice in effect denies people with disabilities their uniqueness as persons.

In order to give as many consumers as possible the opportunity of administering their own personal assistance STIL has on its program peer support groups and peer counselling courses where consumers can acquire the necessary administrative skills and train to become more self-directed and assertive individuals.

When pointing to the documented success of consumer-controlled personal assistance services as they exist, for example, in California, England, New York City, and Denmark , the reply is often that in Sweden there is a different social climate where local governments are strongly committed to providing such services. Swedish law in this area (socialtjänstlagen) counts people with disabilities among the "weak" groups in society together with children, older people, immigrants, etc. whose special protection local governments are charged with. As it is often put, "in Sweden we take care of each other". In this climate consumer-run assistance services are seen as a necessity in the US to which people with disabilities in Sweden do not have to be exposed to. The fact that in Denmark (whose social welfare policies are quite similar to Sweden's) individuals with extensive disabilities have had personal assistance schemes , as propagated by STIL, since the late 1950's is quite disconcerting to advocates of this position.

The language used by STIL seems to stir up sentiments, such as STIL's insistence on individual control over hiring and firing. In a social climate where terms like "home samaritan" were developed, the thought that persons who have extensive disabilities and depend on physical help should be able to fire their "samaritans" is a provocation to many. The same is true for STIL's demand that individual consumers have to be able to be employers of their workers, if they so choose. While anyone is legally free to hire other persons' services, to some people in Sweden, the word "employer" seems to carry the connotation of upper class membership. The thought of people with disabilities as employers might cause some discomfort then, because it would turn their perception of the social order upside down where people with disabilities have always been at the bottom of the totem pole.

STIL which considers itself as part of the world-wide Independent Living Movement points to the uneven distribution of power in the encounter between professional service provider and consumer and talks about the need for people with disabilities to empower themselves. Many persons including individuals with disabilities dislike the word "power" in this context. Persons with disabilities are apparently not expected to be self-directed and assertive, since physical dependence is often automatically associated with emotional dependence.

IV. Research Issues

Despite the fact that public personal assistance programs have been in existence in Sweden for over 50 years there has been surprisingly little in the way of policy evaluation. The work that has been done in this area is restricted to gathering descriptive statistics on numbers of hours provided by type of service, number of consumers, staff, and expenditures. Decisions on the extent and organizational form of the services seem to be made by local politicians and administrators without virtually any analytic research on questions such as needs assessment, quality of services, impact of the service on consumers' lives, the rate of substitution between personal assistance and other services for people with disabilities, or the influence of personal assistance on the incidence of institutionalization.

Sweden is probably one of the countries with the oldest and most extensive experience in this area. For these reasons and because of the country's longstanding tradition of keeping excellent records Sweden provides a unique opportunity for in-depth studies of personal assistance. Research on Swedish personal assistance delivery systems, with due consideration of the problems of transferring programs from one social policy climate and institutional framework to another, can provide valuable policy information to disability advocates, social policy decision makers, and service providers in other countries where the establishment or expansion of existing services is contemplated.

In the following a very brief discussion of some of the research issues raised by Swedish personal assistance schemes is p

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Foreword to the Internet edition