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Personal Assistance Services for the Disabled and Elderly in Bremen

Svantje Köbsell, Selbstbestimmtes Leben, Bremen, Fed Rep Germany
Thomas Hilbert, Hauptgesundheitsamt, Bremen, Fed Rep Germany

Finance

Disabled people in the Federal Republic of Germany have, in principle, the right to receive cash payments from the social services office to pay for their personal assistance. The amount is means-tested and the number of assistance hours is determined by a medical doctor. While the law places priority on community-based services, the amount granted may not exceed the costs of residential care facilities.

There is also a federal program which grants DM 812 per month to disabled people who fulfill special criteria (e.g., without use of three or more limbs, double amputees, spinal chord injuries) and earn less than a certain income. The monthly grant is supposed to be used for such special needs as special clothing, laundry, a larger apartments, etc. The program can also cover the costs of personal assistance.

The Provision of Personal Assistance Services in Bremen

Bremen with a population of 530,000 is the smallest federal state in the Federal Republic of Germany and is situated in the North. The agencies for personal assistants in Bremen are the so-called social service centers run by large charity organizations such as the Red Cross. These centers have existed since the early seventies and can be found in all parts of the city. The clients, the majority of which are old persons, receive assistant referral.and counseling on many subjects.

In the Federal Republic of Germany, most personal assistance work is done by conscientious objectors. Young men have the right to refuse to do military service, and instead undertake some civil service which lasts 20 months. Civil service is mostly carried out in hospitals and institutions for old and disabled persons. The social service centers can refer conscientious objectors on a short-term basis, for example, for window cleaning for someone who cannot do this himself. Persons with extensive disabilities are eligible for two of these young men as their personal assistants. In fact, for people with limited incomes who need a great deal of assistance, this is practically the only way to live outside of an institution. Conscientious objectors are free of charge to eligible persons, whereas assistants regularly employed by the consumer himself demand proper wages including social security costs which makes this alternative very expensive.

This solution, however, is not without problems. Women, for example, who do not wish to be assisted by young men, often find it prohibitively expensive to hire female assistants whom they would have to pay market wages. Another disadvantage is the regular turnover of assistants every 20 months, when their service is over. Also, both sides often have no real choice in the matter; the young men do not voluntarily take on the work and are under the surveillance of the military. In addition, old people often experience the increasing age difference between them and their assistants as a problem.

Though the majority of the clients are old persons, the staff of these centers are increasingly burdened with the issue of independent living for younger disabled people. Often, they have very little time for each client.and are unable to provide qualified counselling for people in difficult situations. Their main work consists of assistant referral. Thus, persons planning to move out of institutions and into the community overtax the resources of the centers. These clients may not only need assistants, but also an accessible apartment, money to live on and a good deal of counselling and support. Often, people who have lived in an institution for longer periods have not learned essential independent living skills. They need someone to accompany them to the various agencies, help them find an apartment and file applications for assistance. And most importantly, these people who are often told that they are incapable of living in the community need someone who supports them in their belief that they can manage a life outside of an institution.

It is a common experience among independent living initiatives that disabled people are far more credible and effective as counsellors than non-disabled experts. The role-model of a peer who has come a bit longer on the way to independence is far more encouraging than regular counselling, as disability is an experience that cannot be imparted through words but must be experienced.

Based on this recognition and the ideology of the Independent Living Movement, that is the belief that all people with disabilities can live independently given the right conditions, a group of disabled people started a counselling center for disabled people called "Selbstbestimmt Leben" (Self-Determined Living). The center offers comprehensive counselling to disabled people and their relatives on all aspects of disability including personal assistance. This includes support in filing applications with the social services office as well as talking over personal problems concerning the disability. The main principle in the center’s work is to do everything together with the client, rather than for the client, as is done in traditional service agencies. Thus, the client can retain control of decisions concerning him instead of being incapacitated by patronizing structures and maintains or re-acquires the ability of running his or her own life.

Apart from working with individual clients the center’s main task is peer advocacy. We discuss the problems of being disabled in and by this society and try to effect changes in attitudes as well as laws. For nearly ten years we have publicly debated special transportation for disabled people vs. accessible public transport systems. Recently a decision was made by the Bremen public transport authorities that the next busses to be bought would be accessible. We have drawn attention to the special situation of disabled women - a double disability, being disabled and a woman!. Further, we raised consciousness about the problems of genetic counselling, the value of disabled life vs. eugenics. Recently, we started an exchange program with disabled people from the United States.

In our work, as well as in the work of the service centers, it is obvious that there are still many people with disabilities who live with insufficient and unsuitable personal assistance. Many of them simply resign, move into nursing homes or remain totally dependent on relatives instead of taking up the challenge of independent living. There are different reasons for this: some individuals, especially older people, are too proud to apply for support at the social services office because they consider personal assistance paid by the public not as a right but as charity. Others who own their home or earn just above the maximum income to be eligible for assistance services do not have sufficient earnings to pay for personal assistance themselves.

The main problem we face in our work is still lack of knowledge of their rights and possibilities on the part of the consumers and the social services office’s failure to give out complete and sufficient information which would enable disabled people to take full advantage of their rights. Much work remains to be done to better the situation of disabled people in Bremen.