by Dr. Adolf D. Ratzka
founder and former chairperson of STIL, Stockholm, Sweden
Personal assistance, like no other service, illustrates the key elements of Independent Living. People who need personal assistance have always been made dependent on others for the most basic needs of life such as eating or using the toilet. Given this physical dependency the conclusion was close at hand to consider us as dependent on others also emotionally and intellectually. If you cannot pull up your pants like a small child, you may be treated like a small child in other areas as well. It is no surprise then that the Independent Living philosophy is most easily grasped by people who need personal assistance.
Traditional Swedish Personal Assistance Services
Personal assistance services in Sweden date back to the 1930's when local governments first started home helper services to assist sick mothers with the care of their children on a temporary basis. Later, in the 1950's the services became available to old persons who needed help with simple household chores. The services were seen as a means to keep them out of institutions. With the explosion of the older population in the 1970's and 1980's the local governments' home help services have become one of the largest budget items and a common source of temporary employment among students and housewives.
According to the Swedish legislation in this area, local governments are responsible for providing home help services to those who need them in obtaining "a reasonable" quality of life. The interpretation of "reasonable" is the prerogative of the respective local government's social services office and can be appealed by the individual user in the administrative court system. Needs are assessed by local government social workers who are to take into account not only medical considerations but also the social situation of the user. Needs are expressed in number of hours of assistance per week. Services are not means tested, they are available regardless of the user's income. However, depending on the local government, users may be required to pay some fraction of the actual costs. In Stockholm, for example, a user with 10 hrs/day, single and with an average income pays presently (1993) the monthly amount of $80 which corresponds to roughly 1.5% of the total costs incurred by the local government in providing these 10 hrs a day. Workers receive wages close to the bottom of the municipal government pay scale, approximately $10/hr during regular workdays, $13/hr at night and on weekends. Swedish employers have to pay 35% of workers' gross wages to the state government in the form of social insurance fees.
It is important to note that home helper services were originally not intended for younger persons and people with extensive personal assistance needs. These individuals were kept in nursing homes. In the late 1960's, Fokus housing, also known as cluster housing, was introduced for younger disabled persons who need personal assistance in their daily lives. This semi-institutional solution forces people to live in certain houses thereby limiting their geographical and social mobility. Users are unable to choose the workers who are to assist them in their daily lives. Users have to adapt their needs to the schedule of the common staff. Services are based on the 'house arrest principle', i.e. they are not available outside the apartment, at work, about town or when travelling. The same limitations go for the regular public home helper services which are community based.
Swedish local governments traditionally have had the monopoly 1) in assessing the needs and supervising the services, 2) in financing the services through local taxes with some revenue sharing from the state government, and 3) in providing the services in kind to the user. This triple monopoly, particularly the production monopoly, has been attacked by the Swedish Independent Living movement which claims that it critically limits users' choices and creates unnecessary dependencies.
The origins of STIL
As a student at the University of California at Los Angeles in the 1960's and early 1970's I had contact with the incipient Independent Living movement in California. Also, I had a scholarship which included an allowance for personal assistance. With these funds I recruited, hired, trained and scheduled my own personal assistants which were for the most part fellow college students. When I moved to Sweden in 1973 to do field work for my dissertation and became entitled to the Swedish public home helper service, I experienced an enormous difference in my quality of life. I was surprised that my Swedish friends who needed personal assistance could put up and get used to the tremendous limitations in their lives that the public home helper services entailed for me. Even more surprisingly to me was their resignation and disbelief that hiring one's own assistants would be a better solution.
STIL's history goes back to a seminar on Independent Living which I organized in 1983 in order to introduce the Independent Living approach to Sweden. Foreign resource persons were Judy Heumann, Ed Roberts, USA and Ken Davies and Neill Slatter, United Kingdom. As a result of this exposure to Independent Living, I was able to find a handful of interested personal assistance users and we formed a membership organization, STIL, the Stockholm Group for Independent Living in 1984 with the aim of promoting alternatives to the public monopoly services, alternatives which would guarantee user control. Our vision was that local governments should pay directly to the user the same amount of money that his or her services would have cost, if provided by the government. This solution was to be an option to those users who wanted it.
These demands met mixed responses. The conservative parties who had been propagating "freedom of choice under own responsibility" for decades embraced them wholeheartedly. The Social-democratic and Communist parties, both at that time in the government, reacted mainly negatively interpreting the demand for alternative solutions as a right-wing attack on the public sector. The unions, in particular, opposed this "privatization" move on the grounds that it would put their members right back to the last century where the upper class kept maids and other subordinates for menial and underpaid jobs.
The established Swedish disability organizations reacted with great hesitation. Traditionally, these organizations have had very strong ties with the Social-democratic party. Social-democratic Members of Parliament have served as chairpersons of the largest disability organizations. The resulting mutual support relationship between party and disability movement explains in part the relatively high level of material provisions enjoyed by disabled people in Sweden. That the services provided by local governments were highly bureaucratic, unresponsive to user needs and totally controlled by service providers mattered less to the leaders of the established Swedish disability organizations. One of the reasons for their insensitivity for members' needs may be the fact that they are still dominated by non-disabled functionaries. When hiring staff professional qualifications and political contacts have been more important than the experience of what it means to be disabled.
STIL, however, managed to gain sufficient publicity and succeeded in realizing our vision in the form of a pilot project. We received a state grant which allowed us to formulate our model and which covered the administrative costs of the project. The money for our personal assistants' wages came from the 6 participating local governments within Stockholm County. 22 personal assistant users participated in the project representing a wide range of ages and disabilities. The project started January 1987 and during the following two years we received wide publicity and political acclaim.
In July 1989 we decided to turn the experiment into a permanent organization. We founded and incorporated a cooperative which we also called STIL, the Stockholm Cooperative for Independent Living. We tried to shape the organizational structure of STIL as closely in line with the Independent Living philosophy as possible.
Control through economic independence
One of the biggest obstacles in setting up STIL as a permanent business was the insistence of local government officials to integrate our scheme into the regular local government administration and considering us as a branch of the social services office. They offered STIL free office space and the salary of 1 or 2 administrative staff in addition to paying us the direct labor costs of our personal assistants. We were not tempted, since we realized that by controlling our administrative expenses and office space, the local government would be able to also control our activities, our growth, and the direction of our movement.
We insisted on negotiating an average price per hour that STIL would get paid for each hour of personal assistance we produce. This price would contain all our costs such as wages, administrative overhead, training and development work. Like any other company we wanted to run our business on income from sales and not on government grants. Grants can be adjusted up or down depending on fiscal priorities and how politically expedient a given activity is for the establishment. We insisted in being considered just as any other enterprise that local governments do business with. In this way, STIL would be able to plan ahead and continue its operations as long as we remained competitive in our price and quality. After a long political battle we succeeded in reaching such agreements with the local governments we do business with.
The single most difficult step in reaching our goal was the negotiation of the price per hour we charge. The social welfare departments of the local governments provide public home help services to users. Their civil servants had to interpret the existence of STIL as evidence of a rising user discontent with the quality of the services they produce. No wonder, then, that they were defensive when STIL offered to take over these services. STIL has always claimed that we can produce better quality services for the same cost. The problem was that local government politicians and civil servants did not know the actual costs of their operations in terms of the average cost per hour of services. Civil servants anywhere have every reason to try to show to their employers, the politicians and the public, that they work as efficiently as humanly possible. It was STIL's task to estimate local governments costs for the home help services and to convince politicians to pay this amount to STIL. In order to avoid having to go through renegotiations every year we suggested to tie our price to the national labor cost index.
Since 1989, when we changed from an experimental project to a regular business, the recession and the political changes in the East have influenced Swedish thinking on the role of the public sector. More and more functions of the State are now taken over by private interests and STIL is no longer a controversial issue. As an increasing number of private subcontractors enter the field of social services it has become evident that the price per hour that STIL charges is significantly below the cost of the regular public home help services and the prices of private companies.
A personal assistant user who decides to discontinue the use of public home help services and instead organize his or her own personal assistance through the STIL cooperative has to get an agreement with his local government. As part of this agreement the local government submits payment for the person's assistance to STIL. The amount is computed by multiplying the number of assistance hours the person is entitled to by the price that STIL and the local government have agreed upon. STIL's contract with the local governments specifies that the money is to be paid quarterly in advance. Within the coop each member has his separate account from which all the costs of the respective member's personal assistance are paid.
All persons who need personal assistance services can become members of the cooperative, if they pass a training course and are voted in by the membership.
Two thirds of member's individual budget go towards assistants' wages and all social insurance payments that an employer has to pay according to Swedish law. Another 18% go to finance STIL's common administration and training programs. The remainder we use for individual administrative costs such as our assistants' travel costs and meals when they accompany us, for paying advertizements in the newspapers when we have to recruit new staff. Some of us pay the rent for a special staff room in their apartment for their assistants. Some have bought cellular telephones with that money for easy communication with their assistants.
Each coop member is responsible for staying within his budget. For hours that have not been used up the corresponding funds have to be remitted to the respective local government at the end of the year. That means assistance hours cannot be saved from one fiscal year to the next.
Members are free to hire anybody they choose, friends, neighbors, family members, etc. Also, they can divide their hours among as many or as few assistants as they like. In this way, a skilled member can recruit the right persons for the right job. Since there is no limit to the number of assistants and since there is no minimum number of hours a person has to work, we can customize our individual staff to our individual needs.
STIL considers itself a civil right organization of persons with disabilities. We are not interested in rehabilitation or other health related issues. Our goal is the equalization of opportunities and the attainment of the means to become full and effective citizens. Our organization accepts persons with all types of disabilities as members. We do not even ask the reason why somebody is disabled. The only thing common to all of us is the need of personal assistance.
We realized early that we would not achieve the aim of maximum individual control over our personal assistance with a minimum of administrative effort, unless we made each coop member responsible for recruiting her own personal assistants. Since cooperative members are individually responsible also for training, scheduling and motivating assistants, each of us can custom-design his services and is guaranteed maximum control over day-to-day operations. All of us are admonished to have a back-up system of assistance in case one or several of one's assistants cannot work. Thus, STIL does not provide the services of an emergency pool of assistants. We encourage members not to share assistants, since this often leads to friction and limitations to the individual user.
We tried to create a system that minimizes interdependencies among users, since we see this as one of the most limiting aspects of institutions. Sharing assistants would create additional bureaucracy and a multitude of rules which cannot be adapted to the needs of each individual. Instead, the individual has to adapt his needs to what would amount to an institution. Perhaps it is appropriate at this point to attempt a definition of an institution. I suggest that we face an institution if
- there is no other alternative,
- we cannot choose who is to assist us with what functions,
- the user has to adapt his needs to the needs of the whole scheme,
- there are written and unwritten rules regulating the assistance, rules over which the individual user has no control,
- the assistance is limited to certain hours, activities, locations
(that is you have to live in certain houses as opposed to living anywhere),
- the staff providing assistance is shared by several persons, and
- there is a hierarchy with the user at the bottom of the pyramid.
We do not live in the same apartment, the same house or even the same city. Cooperative members can live anywhere, since personal assistance in our solution is unrelated to our housing situation. It should be mentioned here that in Sweden we have been fortunate in having building codes since 1977 that stipulate accessibility in multi-family housing. In the City of Stockholm, for example, approximately 7 per cent of the housing stock is accessible to wheelchair users. With priority at the municipal housing exchange agency for disabled persons and the means-tested housing allowance for disabled persons, finding accessible housing is no major problem.
One of the reasons why the traditional Swedish personal assistance services are not responding to our needs is because they are highly professionalized. Workers are promoted on the basis of formal training, mainly in health related courses, and not on the basis of user satisfaction. In fact, instances have been reported where workers were moved to other districts after the people they were working for had told their supervisors that they liked particular workers. The motive for separating the users from the workers for which they had expressed a liking was that personal attachment is believed to inhibit an efficient and professional relationship between worker and client.
The municipal home help organization is built along strict hierarchical lines with over a dozen levels of command between the politicians in charge at the top and the user at the bottom of the pyramid. Needless to say that under these circumstances the users have very little to say in such matters as who is to assist them, which tasks workers are to do, at what hours and how.
In STIL we are trying to empower the users. Personal assistance users - not government officials or social workers - founded STIL and designed its organizational form. Most of us prefer workers who have no health-related working experience. For one, our assistance needs are practical and not medical in nature. Also, health-related training is geared to institutional settings where the patient's control of services is minimal. Instead, each of us trains his or her assistants in how he wants things to get done.
Each cooperative member is the supervisor of his assistants. We do not have a hierarchy with social workers on top, personal assistants in the middle and clients at the bottom. Our lives have been dominated by professionals for so long that we cannot allow employees of STIL or other members to treat us as "clients". Empowerment, as we see it, does not occur in an expert-client relationship, it can best be achieved among equals. In STIL, the sharing of information, insights and support is mutual and all members are expected to take part in this process.
Self-determination and democracy
We chose the organizational form of a cooperative, since it seemed best suited for our purposes. A cooperative is a democratic membership organization, one person - one vote. Only personal assistance users can be members in the cooperative and serve on its board. Board members are elected for 1-year terms by the general annual meeting.
Staff positions are primarily reserved for people with disabilities, preferably, personal assistance users. In a society where, according to recent government statistics, 70% of us are unemployed we must reserve the job and training opportunities in our organizations for ourselves. When STIL contacts local governments, meets politicians and civil servants, and when we sit down to negotiate contracts with local governments, only personal assistance users may represent the coop.
STIL has the ambition of developing a high quality training program aimed at improving membership in many areas. One of these areas is personal growth. We know from experience that receiving the money to employ one's own assistants does not automatically make a person a good employer. Many persons with disabilities who grew up in over-protective parental homes or institutions have difficulties in asserting themselves without becoming aggressive or denying their own needs. To recruit the right people, train, direct, evaluate and motivate them requires skills which can be taught and acquired. The transition in our role from being an object of public care to becoming the boss of other people is difficult and requires most of all a change in the perception of oneself. Peer counselling and role playing are used here as educational tools.
Peer counselling means to share the fruits of one's experience. This principle is used by STIL in many areas of personal growth. For example, in our group sessions members are encouraged to identify life aspirations and to come to an understanding of how personal assistance can help them in achieving these goals. In these sessions only personal assistance users are present to share their problems, insights and solutions.
For members who need more individual attention and guidance than our group sessions and courses can provide we have a "buddy" system where persons who have been members of the cooperative longer teach and support newcomers on a one-to-one and more intensive basis.
Personal growth through learning
The participation in the organization and the function of supervising assistants offers members many opportunities for learning organizing skills. The STIL cooperative is a membership organization following the principle of "one person - one vote". Many of our members are not used to speak in a group, to take a position and argue for or against someone. Familiarity with the democratic process, bylaws, voting procedure, etc. has to be acquired. We rotate chairpersons in our meetings in order to give everybody the opportunity of learning how to lead a meeting. Also, directing one's personal assistants and serving on the cooperative's board or one of its committees provides excellent opportunities for leadership development.
Several members are gainfully employed in the cooperative's central administration. Other members volunteer their time thereby acquiring important skills such as computer literacy and clerical routines. The cooperative utilizes administrative skills training courses as well as tutors and senior staff members as instructors on a one-to-one basis.
In order to form the cooperative and to secure its growth and development we had to learn how to use the media, approach politicians and civil servants, and deal with labor unions. We are still learning. We still have not managed to enlist support from other disability organizations and senior citizens' organizations. We are turning to university teachers, management consultant firms and search among our personal contacts for advice on how to market our ideas, build networks and coalitions and develop lobbying skills.
Another source of training for our members are business schools and consulting firms who teach management skills for executives. Since each cooperative member is personnel manager and supervisor of 10 workers on the average, we are in the same situation as executives who have to learn how to use time efficiently, recruit good people, and how to delegate and motivate them.
Members also have to know current laws on labor relations, the working environment and other legal matters. For this part of the training we hire legal advisors and labor market experts.
Since we find ourselves running a business, our board members - all of us basically lay persons - have to learn how to balance a budget, set wages for our employees, find office space, deal with certified accountants and solve a myriad of practical problems. With many of these decisions we received expert help from the Swedish Cooperative Movement and its consulting facilities for beginning cooperatives.
STIL's international work
STIL has wide international contacts both through the interest that our personal assistance solution has created abroad and through STIL's membership in ENIL, the European Network on Independent Living, (Adolf Ratzka is founding chair of ENIL, 1989-1992) and the Independent Living Committee within Disabled Peoples' International. Thus, STIL is the main contributor and publisher of the DPI Independent Living Newsletter with a circulation of presently 5000 copies aimed mainly at persons with disabilities and their organizations in developing countries and Eastern and Central Europe. STIL is also the base of Independent Living Import.. We import and try to sell goods produced by organizations of disabled persons in developing countries. We specialize in toys and greeting cards. STIL also supports Disabled People South Africa by sponsoring their regional development office in the Transkei-Ciskei area.
Advantages and disadvantages of the cooperative solution
As a business STIL has now been in existence since 1989. The presently 110 STIL members have a total of 600 assistants together. STIL is now an established company with an annual turnover of over $7 million. We have assisted personal assistance users in other parts of the country to start cooperatives along similar lines. Presently there are 8 Swedish personal assistance user cooperatives, the first and largest being STIL.
Among the many advantages of our scheme are the changes that members have undergone. There is a strong sense of pride and accomplishment. Instead of limiting ourselves to complaining about the poor quality of the public services, we demonstrated for ourselves and the general public that disabled people are capable of taking their affairs in their own hands. The demonstration of the viability of our vision and our capabilities has gained us respect among politicians and civil servants. We generate good will in the community and contribute to an improved image of disabled people. Representatives of STIL are now considered experts and are invited to speak on cooperatives and how to improve the quality of public services. In this way we have improved our possibilities of bringing about change.
STIL does not provide services. Instead, each of us provides his own services to only himself or herself. That means that we do not have office staff who function as social workers and consider our members as cases or clients.
Each cooperative member is the consumer of the very same services that he or she produces. Thus, a cooperative member who is dissatisfied with the quality of services he is getting, can improve services himself by improving his or her supervisor skills.
The cooperative construction enables many persons to be employers who otherwise would not have been able to do so. The cooperative does all the negotiating with local governments and labor unions as well as most of the paper work. One member in the cooperative, for example, is a 24-year old man with Downs syndrome who does have help from his mother in supervising his assistants. His mother, however, has often stated that she would have never had the time and energy in doing the administrative work that the cooperative does for her son. Also, being part of the cooperative, according to her, has provided him with a sense of responsibility and community as well as role models of other disabled people. For her STIL has meant more freedom and a life for herself than she ever had before. We have four more learning disabled members and several children. These members can function in our cooperative with the help of a family member who takes on some of the responsibilities. So far we have not developed solutions for persons who would need such support but do not have a family member for this.
Among the potential disadvantages of the cooperative model are that running a business takes a lot of energy and time which the organization otherwise would be able to devote to political work. Further, our insistence on self-determination implies that only personal assistance users serve on the board. This meant in our case, that lay people had to start up a business that expanded tremendously. Looking back I realize that there were times when STIL was close to breaking down for lack of internal financial control and basic business routines.
Also, when a disability organization becomes a service provider, the goal of providing quality services and the goal of generating a surplus may not always be compatible. The potential goal conflict will depend on the degree of choice and control exercised by the individual user of the services. In the case of STIL the high degree of personal responsibility over one's services minimizes the effect of the coop on the quality of the services. Also, dissatisfied members have the option of leaving and starting another coop along their own lines.
In STIL, our experiences so far have convinced us that the cooperative model with its tradition of democratic decision making together with a hard-nosed business outlook has its definite place in the provision of personal assistance services. We are interested in spreading this solution by providing technical assistance and advice.
Dr. Adolf D. Ratzka
Petersens väg 2
127 41 Stockholm-Skärholmen
Sweden. Fax 46-8-740 45 00.
For more background information on the institutional framework of Sweden in this area see Ratzka, Adolf Dieter. 1986. Independent Living and Attendant Care in Sweden: A Consumer Perspective . New York: World Rehabilitation Fund Monograph No. 34. (Available in Japanese from Gendai Shokan Co., Ltd., 2-2-112 Misakicho Chiyoda-ku, Tokyo.)