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
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
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.
- to enable service users to take control and responsibility over their
- to create training and employment for persons who have been considered
unemployable because they need personal assistance at work,
- to use these self-help schemes for income generation for the movement.
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
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