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Consumer-Run Personal Assistance Services: The Example of STIL

Adolf D. Ratzka, The Royal Institute of Technology, Stockholm, Sweden

With increasing standard of living and medical advances in most countries the population aged 65 and older is on the increase. Given the low residential mobility which we can observe in many cities there is a clear correlation between age of building stock and age of residents. The possibilities for "aging in place", however, as desirable it may appear to most persons who do not want to give up their familiar geographic and social environment as they get older, are limited.

The incidence of physical and sensory disabilities increases with age. As a consequence, the shape of the built environment with its accessible and inaccessible features, assumes the role of an allocation mechanism which determines who can stay and who has to move to a more accessible housing unit and neighborhood, perhaps, even to a residential institution. Inner city renewal therefore has a decisive influence on the housing choices and quality of life for inner city residents.

Accessible inner city renewal by itself, however, is not a sufficient condition for aging in place for inner city residents. Many persons with disabilities need not only accessible environments but also personal assistance services to compensate their functional disabilities. These services may include such activities as assistance with personal hygiene, household chores, assistance at work and while travelling, sign language interpretation or reading services. Thus, in addition to the presence or lack of accessibility in the built environment, the quantity and quality of personal assistance services in a given community also act as mechanism which either enables people to continue to live in their familiar environment or forces them to move to residential institutions.

In most countries, it is safe to say, organized community-based personal assistance services do not exist. There, it will be up to the individual’s family to provide such services. Persons in need of such services without family will have to spend their lives in segregated housing facilities, if there are any. The resulting fear of loss of physical independence, of dependency on one’s relatives and the threat of being shut off in an institution away from family and friends characterizes the situation of old and disabled people in many cultures and is often considered an inevitable and even natural part of the human condition.

Even in the few countries where community-based personal assistance services do exist, integrity, respect and self-determination of the consumer of such services may not be guaranteed.
Services may be limited in quantitative terms providing an insufficient amount of hours which results in a restricted life with hardly any options, only mere survival.

Another limitation often overlooked in the debate on personal assistance services and alternative solutions for old and disabled people in general is the quality of services. While there are many different dimensions to quality, the most important ones to consumers who demand the right to the same opportunities that the general population enjoys are control and self-direction. These variables are directly related to such issues as organizational set-up, division of responsibility and, ultimately, power. In most personal assistance schemes that I know the services are run by centrally located social workers who work for a public or charity agency. They are usually responsible for hiring and firing the assistants, their training and scheduling. Consumers have to pass means tests and needs assessments. Their input is limited to filing complaints. Thus, the way the services are organized often relegates consumers to the role of passive objects who cannot decide who is to work for them, at what times, with what activities and how. Under these circumstances consumers are made to feel powerless, are robbed of opportunities to take responsibility and initiative and, finally, will be seen by their surroundings -and most likely by themselves- as helpless people who are unable to "take care" of themselves. Thus, this wide-spread prejudice against people with disabilities is often the result of a self-fulfilling prophecy.

In this context it should be pointed out that the impact of community-based personal assistance schemes on life-style, image and self-image of the consumer, in the worst case, can approach residential institutions. Institutions need not consist of brick and mortar. Consumers of such services can be exposed to ambulatory institutions even in their own home, if somebody else makes all the decisions.

Given the importance of the organizational set-up of personal assistance services for consumers’ ability to lead self-directed lives with equal opportunities in the community it is surprising that so little attention has been paid to this variable. Literature and public debate focus on financing instruments, needs assessments and recruitment problems of workers. If quality of services is discussed at all, then mainly in terms of workers’ training.

Only relatively recently have organizations of disabled people themselves begun to discover the importance of how services are organized. Representatives of the Independent Living Movement , the international civil rights movement of people with disabilities, were the first to demand de-professionalization and the right to organize and run services themselves. To initiated observers this development was no surprise, as the leaders of the movement -in contrast to traditional disability and charity organizations- were predominantly individuals in need of personal assistance themselves. In the following, the Swedish STIL-project, one way to organize personal assistance services according to Independent Living principles, will be presented.

STIL, the Stockholm group for Independent Living, considers itself part of the international Independent Living network. In order to guarantee self-determination in the organization only persons who need personal assistance have voting rights in STIL. Also, all of the office staff - except for a secretary - are people who need personal assistance. Thus, the organization has created opportunities for gainful employment and important training for persons who have great difficulties on the Swedish labor market. STIL was founded in 1984 with the expressed goal of improving personal assistance services in Sweden. Since January 1987 STIL has operated its demonstration project which the organization intends to be able to introduce as a permanent option after the end of the project period in 1990.

The most important feature of STIL’s personal assistance scheme is that the consumers are the employers of their assistants. STIL claims that only the employer status results in the maximum control over this key service. Participants in the STIL-project have formed a cooperative that has the formal employer function. As employers, each of the participants in the project is responsible for hiring his or her assistants. Participants advertize and interview job applicants and make the hiring and firing decisions. The cooperative assists with paper work and expedites payment of salaries, withholding of taxes and similar administrative tasks. STIL organizes courses and workshops on such topics as to how to hire and schedule assistants and how to use personal assistance in the most efficient way.

The money to pay for assistants and administrative costs comes from the municipal government. In Sweden the municipalities are responsible for providing personal assistance which is provided either in the form of semi-institutional cluster housing or, much more commonly, by the municipal home help service. Cluster housing means that up to 15 disabled persons live in their own apartments among non-disabled people in the same housing complex where they have 24 hour a day access to a common staff. In the municipal home help service social workers send municipal workers to the homes of disabled persons where they work on an hourly basis. In providing these services the municipality has a certain average cost per hour produced. Each participant in the STIL project gets this cost per hour multiplied by the number of hours that he or she is entitled to.

The STIL project is popular with the municipal government, since it relieves them from much administrative work. For the project participants the changes in quality of life have been dramatic. Before, they were dependent on their social workers’ attitudes and skills in finding and scheduling assistants. Before, members had up to 67 different persons during one months who were to work for them with often very intimate tasks. 67 different persons to instruct over and over again !

Also, in the cluster housing settings and the municipal home help service consumers’ lives are limited by many written and unwritten rules. As in any other institution, consumers of these municipal services have to adapt their needs to the needs of the service provider. As employers project participants now have full freedom in adapting the service to their individual needs. The former objects have become subjects.

Before, personal assistance, for all practical purposes, was only available in the consumer’s home thereby effectively keeping him under house arrest. Today, project participants can take their assistants along to work and on travel. Two project participants spent the winter months in California and Tenerifa. This is now possible, because participants can take along assistants, pay them full wages, travel and hotel costs with project money -at no extra cost to the municipality. These two members were hopelessly stuck and very unhappy in cluster housing situations only a year ago.

The STIL-project seems to have great potential in enabling persons in need of personal assistance to get closer to the goal of equal opportunities. STIL has shown that, regardless of extent of needs, there is no justification for keeping people in institutions and paternalistic dependency.

It should be emphasized that this particular model is only one of many conceivable ways of organizing such services. Choice is the key to independent living. The research and development work necessary now is to develop and test a multitude of such solutions with the aim of enabling the individual consumer to custom-design his or her individual system which solves his or her individual needs and thereby affording the consumer the same degrees of freedom on the housing market and in other areas that the general population enjoys.