AOEO_E

THE PRACTICE OF WORKSHOPS FOR THE PEOPLE WITH EPILEPSY

A.Okamoto, E.Shimokawa, K.Kumamaru, S.Harada1 and Y.Suzuki2
Fukuoka Branch, 1Kagoshima Branch, 2Center, of Japanese Epilepsy Association
(Presented on the 1st Congress of Asian Oceanian Epilepsy Organization in 1996)

Updated Sep.25.2001：Visitors since Sep.16.1996

Introduction

In Japan, the benefits of social welfare are not guaranteed to people with epilepsy. Approximately half of the people with epilepsy were obliged to stay at home after graduation from school, in spite of their efforts and help to acquire a job. To provide people with epilepsy essential facilities for vocational rehabilitation, the members of the Fukuoka branch of the Japanese Epilepsy Association (JEA) established the first workshop "Akari" in Fukuoka in 1994. Two more workshops, "Sazanami" and "Nozomi", have been established this year. Through the practice of our activity to manage workshops, necessary roles of special workshops for people with epilepsy were revealed.

Methods

First, the reason why special workshops are necessary for people with epilepsy were considered (Table 1). Then, barriers and roles of workshop were discussed through evaluations of situation and daily life of members. Necessary attentions were also considered.

Results and discussion

As shown in Figure 1, 68% of all members had been staying at home before attending workshops, and 75% of all members have at least one concomitant disabilities except epilepsy (Figure 2). They have progressed in their vocational abilities through attending workshops (Table 3 and 4). Various barriers to employment for people with epilepsy and expected roles of workshops were discussed and summarized in Table 5. Adjusting appropriate program for individuals may effectively contribute to lower the barriers based on various disabilities. Special attentions should be paid on rehabilitaion at workshops (Table 6).

Conclusion

1. For the people with epilepsy obliged to stay at home, a special workshop is very important and effective for the vocational rehabilitation to participate in the community and to stand at the starting point of regaining his/her personality.

2. Developing a adjusted program is necessary for a person with epilepsy to participate in as a member at workshop.

3. Not only workshop but also comprehensive rehabilitation program is essential. Accumulation of many experiences through local practice may advance the next step to improve the situation of people with epilepsy.

Table 1. Why workshops are necessary for the peolpe with epilepsy?

1. It is difficult to get job because of their insufficient social adaptability in spite of eager efforts of them and their parents.

2. Staying at home, especially for young people, apt to resulting in not only wasting time but also bringing indolent habit of irregular life style.

3. Employers usually do not fully understand the vocational problems combined with epilepsy, that reduces opportunity for people with epilepsy to work.

4. Social facility is not available.

5. Vocational rehabilitation program specially designed for people with epilepsy is not ready.

Table 2. Three workshops established by the Fukuoka Branch of JEA 　　

Name (meaning) Members n Disabilities n Staff Established year

Akari* (light) 15 Epilepsy 15
Mental retardation 13
Psychosis 3
Autism 1 3 1994

Sazanami (ripple) 5 Epilepsy 4
Psychosis 3
Mental retardation 1
2 1996
Nozomi (hope) 5 Epilepsy 5
Mental retardation 4 1 1996

*5th Hikari Cooperative Workshop

Name (meaning)	Members n	Disabilities n	Staff	Established year
Akari* (light)	15	Epilepsy 15 Mental retardation 13 Psychosis 3 Autism 1	3	1994
Sazanami (ripple)	5	Epilepsy 4 Psychosis 3 Mental retardation 1	2	1996
Nozomi (hope)	5	Epilepsy 5 Mental retardation 4	1	1996

Table 3. Daily and yearly schedule for members

Daily schedule

9:00	staff attendance
10:00	member attendance
	toilet cleaning (in turn)
\|	work
	arranging lunch (2 times a week for each)
12:00	lunch and rest
13:00
\|	work
15:00
	meeting
16:00	leaving home
	staff conference

Yearly schedule in 1996 (major events)

May	Kyusyu-Block Congress of JEA (Kumamoto)
	Including sightseeing
August	Home concert
September	Bazzar by local community (3 or 4 times a year)
	Watching professional baseball and soccer games
	Camping, joining with camping by JEA
November	Bazzar by workshops
December	Year-end party, Christmas party
March	Tour

* Parents meeting and birthday party are held every month.

Table 4. Works and wages

*hijiki: a kid of sargassum

Table 5. Barriers to employment for people with epilepsy and expected roles of workshops

Barriers Roles of workshop

Personal Lack of social adaptability, difficulty to cope with others, strong dependence to others, little spontaneity, whimsicality Arrangement of individual role, making friends through the daily activity, management of diet and money

Refusing accepting their own disability: shifting responsibility, inappropriate self-estimation Supportng acceptance of their own disability through friendships and peer counselling, encouraging to regain self confidence

Physical instablity: impatience and instability to work Close communication with doctors, adjusting program for each individual

Physical weakness Preparation of schedules for exercise

Disability: mental retardation, phsychotic status Understanding individual disabilities and providing adjusted program for ecah

Family Parents hesitate to accep real condition of their children Tight communication with family: monthly parents meeting

Social No systematic facilities for rehabilitation Appealing necessity of workshops, demanding enough financial support to the government and comunity, accumulation of many experiences through practices by local workshops

	Barriers	Roles of workshop
Personal	Lack of social adaptability, difficulty to cope with others, strong dependence to others, little spontaneity, whimsicality	Arrangement of individual role, making friends through the daily activity, management of diet and money
Refusing accepting their own disability: shifting responsibility, inappropriate self-estimation	Supportng acceptance of their own disability through friendships and peer counselling, encouraging to regain self confidence
Physical instablity: impatience and instability to work	Close communication with doctors, adjusting program for each individual
Physical weakness	Preparation of schedules for exercise
Disability: mental retardation, phsychotic status	Understanding individual disabilities and providing adjusted program for ecah
Family	Parents hesitate to accep real condition of their children	Tight communication with family: monthly parents meeting
Social	No systematic facilities for rehabilitation	Appealing necessity of workshops, demanding enough financial support to the government and comunity, accumulation of many experiences through practices by local workshops

Table 6. Necessary attention on rehabilitation at workshops

1. To compensate inappropriate judgement and decision by themselves, supervision may be essential. After one work has been accomplished, then, next direction should be offered.

2. It may take longer time for someone to make friendship with other members, another may certainly progress a good relation to others.

3. It is imortant to practice management of money. Many people needs concrete program of SST.

4. A fulltime work may be difficult for many people, while a part-time work may be able to be accomplished. Adjusting program and physical exercise to increase strength are important.

5. Seizures may not influence on working ability, that may depend on how to conquer the disturbance.

6. Although possibillty of having seizures on commutation cause an anxiety, it may be solved by appropriate selection of route and time, and by real practice for a certain period. Preparation to minimize confusion if they hit on unusual case and chose a way by themselves.

7. Goal of the rehabilitation shold be placed on independent life like that at a group home. Anxiety for accidents such that on taking a bath, must be removed.

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