Presentation of JAG

by Anna Tengström

The word "JAG" in Swedish means "I" or "me". The users of personal assistance who are members of JAG are subjects, individuals, and not (as before) objects of care. The word "JAG" is also formed of the first letters of the Swedish words for Equality, Assistance and Integration - immensely important words for JAG's members.

Organization

One part of JAG is an association which works with issues related to personal assistance and disabilities. The other part of JAG is a cooperative of users of personal assistance. Ideologically, JAG belongs to the Independent Living movement. The association JAG and the cooperative JAG are both organized in the form of national, non-profit associations.

Membership in JAG

Only a person with multiple, severe disabilities including some kind of intellectual disability can become a member of JAG. Others can become supporting members, without the right to vote. Only a member of the association JAG can be member of its Board of Directors. JAG's members are, with few exceptions, represented by their legal guardians.

Members of the cooperative JAG, due to their intellectual disabilities, cannot be burdened with the responsibility of being members of its Board of Directors. To risk making the members personally responsible for decisions concerning large amounts of money would be unethical. To achieve the closest connection possible between the members and the management of the cooperative, the Charter of the cooperative JAG stipulates that only a legal guardian to a member of JAG can serve on the Board.

For the same reason, JAG's members are unable to work at the central office. Some of the staff at the central office are parents of members of JAG, and thus have valuable experience and knowledge of JAG's members' situations and needs. Among JAG's members are persons with developmental disabilities, as well as persons who have had a head injury caused by an accident or by illness. With few exceptions, JAG's members also have extensive physical disabilities. Most of JAG's members have no speech, but express themselves in their own very personal way. The nature of the members' disabilities presents problems to achieve user-control of personal assistance. JAG has undertaken the difficult, but not at all impossible, task to provide user-controlled personal assistance of high quality to its members. The JAG-model will be presented further in the following.

Personal assistance in Sweden before the 1994 assistance reform

People in the situation of JAG's members are probably those who need personal assistance the most. Because of their very individual needs of care, and because of their communication and intellectual disabilities, no other form of service works. The service must be safe, continuous, personal (that is, designed by the user) and given with respect for the user's integrity. In JAG's opinion, only personal assistance meets these requirements.

In recent history, persons with intellectual disabilities in Sweden had the limited choice of either living in hospitals or other institutions, or living with their families (most often parents). Those families who struggled to keep their relatives out of institutions found themselves in a very difficult situation. Parents and other relatives gave personal assistance day and night, most often having no possibility to have a job outside of their home. They were given little or no financial compensation for their work, depending on the attitude of the local municipality. A variety of different public services were offered. These services were most often designed to relieve the family, lacked continuity, and certainly did not offer any self-determination for the user. Within the legislation of that time, the municipal social authorities could provide services similar to personal assistance. However, the individual had no right to decide on the form of the service, and not many persons with multiple disabilities were "lucky enough" to live in a municipality where the social service office understood their needs (or, rather, were willing to cover the costs for their extensive needs of service).

In the early 1970s, some parents of children with multiple disabilities formed a working committee within the Swedish National Society for Persons with Mental Handicap (FUB). This committee, lead by the director of JAG, Gerd Andén, struggled to convince Swedish government officials at all levels of the need of personal assistance for persons with intellectual disabilities. This work was fruitful, and a few years later some municipal social service offices in different parts of Sweden began to provide services in form of personal assistance. At that time, the committee believed that the assistance had to be organized within the framework of public services, since these users are not able to supervise their own assistance. However, the users' experiences gradually identified other possible solutions, and in 1992 JAG was formed as a small-scale cooperative financed by contracts with its members' municipalities. Quite a few of the people whose parents in the 1970s fought for personal assistance are now members of the cooperative JAG.

Development of JAG

When the assistance reform came into force in 1994, a large group of people with multiple disabilities were granted the necessary funding for their assistance, and JAG grew rapidly. In March 1994 the cooperative had 13 members, and at the end of the year there were about 100 members. JAG now has 176 members, and is still expanding. JAG employs more than 900 assistants, producing over 800.000 personal assistance hours per year. An expected annual turnover in 1996 of over 140 million SEK (or 16 million ECU) makes JAG the largest cooperative of users of personal assistance in Sweden. This is due to the fact that JAG's members need in average nearly 100 hours of assistance a week, which is quite a lot. The majority of JAG's adult members need assistance 24 hours a day. Normally, children have been granted less hours of assistance than they actually need, since all parents are expected to take care of their children within the bounds of parental responsibility.

The cooperative JAG is inspired by STIL and organized similarly to STIL. After application and acceptance, a person is granted funding for a certain number of hours of personal assistance per year by the national social insurance office. The user chooses (through the legal guardian) JAG to be the employer of his/her personal assistants. A contract is made between the member and JAG. JAG charges the member a certain price per hour of assistance, which covers the costs of the assistants' wages, JAG's administrative costs, educational costs and the user's expenses for accompanying assistants. The member chooses his/her assistants, when, where and in what way the assistance is to be given. JAG makes employment contracts with the assistants. The member reports to JAG the number of hours of assistance given by each assistant every month, and JAG pays the assistants' wages (including compensation for unsocial hours and social insurance). Monthly reports on the total number of hours of assistance used for each member are provided by JAG to the national social insurance office.

User-control through a deputy supervisor

Unlike STIL's members, JAG's members are, due to their intellectual disabilities, unable to organize and supervise their own assistance. Therefore every member of JAG has a deputy supervisor by his/her side. The title in Swedish for this person is "servicegarant". The deputy supervisor is chosen by the member (through the legal guardian). The duties of deputy supervisor are defined in a contract between the deputy supervisor, the member and JAG. Many of JAG's members have chosen a close relative to be deputy supervisor, some have chosen a friend or other person that he/she trusts. The deputy supervisor must be a person who knows the user well, and can communicate with the user. The deputy supervisor has a twofold function. Firstly, the deputy supervisor is responsible for recruiting, instructing, supervising and scheduling the assistants in accordance with the user's preferences. In organising and administrating the assistance, the deputy supervisor must always put the user's interests before the staff's interests. Secondly, the deputy supervisor guarantees the continuity and safety of the assistance. In this way the deputy supervisor functions as the "safety net" of the assistance. For many of JAG's members to be left alone for a single moment could be life-threatening. In a situation where for some reason one assistant does not come at the appointed time, the JAG member is unable to use the telephone to call a substitute. The assistants must at all times be able to reach the deputy supervisor, who has the responsibility to get a substitute - or to provide the assistance himself/herself. Without this back-up support, the assistance could not be safe.

JAG's central office supports the deputy supervisors by information concerning labour laws and collective labour contracts etc. The deputy supervisors can always consult the central office for advice when employing or firing assistants, and in various other situations that may arise. The office also offers legal advice to members, legal guardians and deputy supervisors concerning funding of the assistance, etc.

Training

1) Instruction/introduction of a new personal assistant. A new personal assistant to a member of JAG needs to work together with an experienced assistant, very often as long as 4-6 weeks, full time. This is because of JAG's members' complicated needs and their very personal ways of communication. This introduction must be provided by the deputy supervisor, or by another experienced assistant under the deputy supervisor's control. It is impossible for JAG to keep a substitute pool, so each member must have a small "pool" of his/her own of assistants who have been thoroughly introduced to the work.

2) Educational programmes for further training of the personal assistants are arranged by JAG. Some of Sweden's leading specialists (neurologists, physiotherapists, psychiatrists, etc.) participate giving lectures and seminars in various subjects. The aim of the courses is to give the assistants a deeper knowledge and understanding of disabilities and how to compensate for them. JAG's members participate in the courses, together with their deputy supervisors and assistants. The funds for education that are available to each member in JAG can also be used at the member's choice to finance education arranged by other organizations. The deputy supervisor helps the member to decide if the assistants need any further training, and what kind of education is needed. JAG's assistants' work is to provide what is probably the most advanced personal assistance that exists, and they do it very well. Nevertheless, there is a continuous need for further training and supervision. Not least, the assistants need constantly be reminded of what personal assistance is in terms of attitudes, respect, integrity and confidentiality.

Experiences of personal assistance in JAG

JAG's model works very well! It is now clear that user-controlled personal assistance is not only a dream for people with multiple disabilities. Generally, JAG's members testify to the enhanced quality of their lives in several aspects:

• JAG's members' physical and mental health is much improved, since they get the proper custom-designed service they need by assistants they know well and trust.
• JAG's members are developing interests of their own, which they have rarely been encouraged to do before. Now members are finding hobbies and activities that they enjoy - in a safe way, with assistance.
• Both JAG's members and their families experience a growing independence. Most of JAG's members had been made completely dependent on the strong support from their families during their entire lives. When first organising personal assistance, it was mainly parents, sisters and brothers, spouses, etc. who were working as personal assistants. Step by step, the members and their families are accepting assistants who are not related or previously acquainted with the family to provide assistance, thus gradually improving family relations. There is even a growing tendency towards entrusting the job as deputy supervisor to one of the more experienced assistants.
• JAG's adult members have been able to move out from group homes, hospitals and other institutions to a home of their own, with assistance. Also quite a few members have moved from their parents' home to live in their own apartment, and more are planning to do so. JAG welcomes and encourages this development, but is also very much aware that these changes should not be hurried, but must be made at the individual member's own pace. Although many difficulties are yet to be overcome, the objectives Equality, Assistance and Integration are no longer out of reach for JAG's members

Anna Tengström
JAG
Regeringsgatan 67
111 56 Stockholm
Phone 46-8-20 20 80
Fax 46-8-20 20 85
koop.jag@swipnet.se