(Individual Training Program)

AIMING AT DISABLED PERSON'S INDEPENDENT LIVING IN A COMMUNITY
by Mr. Shoji NAKANISHI
Director, Human Care Association

A. History of Human Care Association

Human Care Association was established as the first IL (Independent Living) Center in Japan in June 1986. As of 1996, there are 56 IL Centers in Japan (18 in Tokyo)
Human Care Association belongs to the Wakakoma Group which comprises the following diversified organizations and activities:

"The First Wakakoma House"
(A day care center for physically disabled persons)
"Mokuba Kobo" (A workshop for disabled persons)
"Raseri" (A house for mentally retarded persons to experience independent living)
"Wakakoma Information Center for Independent Living"
(A Center that provides disabled persons with information they need, for example, schools, transportation and accommodation, etc.)
"Pao" (A group of mentally disabled persons for mutual support. The activities include painting and running a small coffee shop)
"Nurse" (A shop that sells technical aids)
"Joy Project" (A project to try to import vehicles which a wheelchair user can drive without transferring from his wheelchair)
"Asia Disability Institute" (An organization for training and assistance towards disabled persons in Asia)

In Hachioji, Tokyo, the number of disabled member of the day-care centers and workshops increased in the beginning of 1980s. Then it became difficult to find their own attendants on individual basis. They realized the necessity of organized attendant care services.

Since severely disabled persons are so often in the custody of parents and teachers, they depend on them. Things are carried out not of their own will but attendants. They are weak in daily living skills of expressing themselves, communicating with attendants, and spending time creatively.

In view of the situation of these disabled persons, the Human Care Association started two major activities; i.e. attendant care service and independent living (IL) program, in June 1986.

B. Activities

At present, the Human Care Association has 15 paid staff. Among them, 8 have such disabilities as cervical cord injury, polio, osteogeneous imperfecta, CP, muscular dystroply, and hemiplegia. Some of them use electric and manual wheelchairs. Three of them have received training at the Center for Independent Living(IL) in Berkeley, California.

The Association's attendant care service is to assist disabled persons in living independently, that is, to help with daily activities such as getting out of bed and going to bed, going to rest room and taking bath, and taking meals. Services are provided in principle from 7:00am to 11:00pm. In some instances, disabled persons can get assistance to get out of bed, go to the bedroom, change clothes, have breakfast and transfer to a wheelchair everyday from 6:30am. Not only physically disabled persons but also aged people and intellectually and psychiatric disabled persons who have difficulty in living in community.

Those who use attendant care services are called "attendance users" while those who serve as attendant are called "care staff". Both of them belong to the Association as regular members. In order to a regular member, the entrance fee is 1,000 yen and the annual fee is 3,000 yen including insurance fee. The users pay 800 to 1,000 yen per hour as well as actual transportation expenses for service. The Association pays the care staff 900-1200 yen per hour and actual transportation expenses, and receive 100 yen per hour to cover management expenses. Moreover, the Association has attendant care deposit system in which members can deposit 100 yen which will be utilized by them and their families in need of attendant care. Then they become more aware of the nature of their service as mutual aid.

The Association coordinates attendant users and care staff. The Association takes charge of receiving and paying money. Disabled persons come to learn the basic of independent living including examining their lives critically and giving exact instructions to attendants. Since they have to pay for services, it is necessary to make efficient use of care services.

C. Independent Living (IL) Program

The Association modified the independent living skill program which has been developed at CIL in USA. The IL program is now conducted for groups and individuals, to give disabled persons a chance to learn with peer counselors how to develop capabilities to lead an independent life in the community without depending on their parent's care or on living in an institution. The peer counselor who is disabled has an equal view point with disabled program participants. The program is conducted once a week during a three-month period. Six to eight disabled persons and two peer counselors participate in it.

The contents of program is as follows:
1. Identity establishment
2. Management of money
3. Communication with attendants
4. Shopping, recipes and cooking
5. Sexuality
6. Health and medical care
7. Human relations
8. Goal setting
9. Usage of time
10. Utilization of social resources

The program uses such method as group discussion, role playing and individual and group presentation. Participants range from students of the schools for disabled persons and disabled persons living with their parents to people in institutions who want to live independently.

Individual counseling is given to make disabled persons realize and cope with matters encountered in community life and develop their assertiveness and self confidence.

In addition to these activities, the Association began in 1988 an intensive course for peer counselors to train them to be leaders and managers of the IL program.

The Study Trip to Overseas Independent Living is to motivate disabled persons to live independently, through t heir experiences in foreign cities who are more advanced in social service including San Francisco, USA; Winnipeg, Canada; Helsinki, Finland; Stockholm, Sweden; Melbourne, Australia, Helsinki Finland, Munich, Germany. The trips have proved to be very fruitful. The expertise of conducting the IL Program which the Association has obtained through three-year experience published in Japanese and English manuals entitled "Independent Living Skill Training Manual". The Association hopes that it will be used by self-help groups of disabled persons throughout the world.

Beyond the services for disabled persons provided by disabled persons, the Association is working to establish a network in the community, which includes not only person with disabilities but also those who need some assistance, example, aged people and pregnant women. Possibilities are sought to develop new job opportunities for severely disabled persons by putting them in a pay position in community activities. There should be possibility for them to work also as attendant for aged people. They can talk and listen to then or give reading service to blind persons.

The Association is planning to organize a wide variety of activities with the national government's assistance.

A Manual for peer counselors course was also published. Human Care Association works to promote awareness of people with potential need of independent living who have various kinds of disabilities.

TABLE

A Comparison of the Rehabilitation and Independent Living Paradigms

From "Resource Book of Training Course for Leaders of Persons with Disabilities 1997"

Japanese Society for Rehabilitation of Disabled Persons