Independent Living Institute


Turning a service into an income generating project

In some countries the field of disability is tightly controlled by professionals who work in rehabilitation, produce and distribute assistive devices or provide such services as personal assistance and paratransit. Often the services we get are insufficient in quantity and quality, carry institutional traits and make us more dependent. These services and especially their administration eat up a lot of resources. At the same time many of us are unemployed and lack training opportunities. What we need to do then is to use our creativity in finding ways to re-channel some of the money that is spent on behalf of us by other people. Start a business, perhaps in form of a cooperative, and take over those services when you are convinced that you can do a better job. The advantages are better quality services, income for our organizations, jobs and training for our own people. All this at no additional cost to the taxpayer. The following article is about how one Independent Living group has gone about it.

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.

In the Swedish Independent Living Movement we believe in self-representation and self-determination. We are the experts, nobody speaks for us but us. In our personal assistance user cooperatives only individuals who use personal assistance are allowed as members and board members. 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.

In Sweden there are presently 8 personal assistance user cooperatives, the first and largest being STIL, the Stockholm Cooperative for Independent Living. STIL is the first alternative to the assistance services which local governments are legally obliged to provide to old and disabled citizens. The cooperative's purpose is to enable its members to improve the quality of their personal assistance by being employers of their assistants and to train and support members in their employer role.

Each member has his or her personal assistance need assessed by the local government. The need is expressed in a certain number of hours of services a week. For persons who wish to arrange the services themselves through membership in STIL the cooperative charges the local government a certain price per hour of services. Multiplying the number of hours a member has been granted by the current price per hour determines the size of the individual member's budget from which he or she pays assistants' wages and administrative costs.

The cooperative is the legal employer of our assistants. The presently 160 members have a total of 800 assistants together. But we do not share assistants. Each coop member is responsible for recruiting, training, scheduling and supervising his or her own personal assistants. We do not live together in one house, in the same apartment building or even the same city. Each of us lives in his own apartment or house with or without family. We are spread out over the whole county and consider our individual housing situation as completely unrelated to our need of personal assistance.

By establishing personal assistance cooperatives the Swedish Independent Living movement pursues three goals: STIL is now an established business with an annual turnover of over $14 million. According to our experience so far, there is definitely a place for this type of venture in the movement. The potential disadvantages are that running a business takes a lot of energy and time which the organization otherwise would be able to devote to political work. 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 individual 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.

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.

Running our own business provides members of STIL with an exposure to managerial training which many of us would have never had given the high unemployment among disabled people. This experience is valuable also for other work in our movement.

Instead of turning to government and private corporations for grants to finance our movement, we try to generate our own funds by achieving a surplus in our business activities. We use part of our administrative resources for spreading the Independent Living approach in the country, for membership development, courses and seminars and international work through ENIL, the European Network on Independent Living and the DPI Independent Living Committee.

Adolf Ratzka

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