INDEPENDENT LIVING MOVEMENT IN JAPAN
INITIATED BY HUMAN CARE ASSOCIATION
by SHOJI NAKANISHI
Chairperson, The Human Care Association

In this paper, independent living of persons with disabilities promoted and advocated by the Human Care Association is focused on.

You can see the sign of the Association from the Keio Hachioji Station which is made completely accessible.
The entrance of the Association	The staff are discussing the design of their newly published manual on self-managed care. Some staff are out to coordinate the dispatchment of personal assistant at user`s home.
Ad hoc porgram Seminar on Nursing Care Insurance	The exit

　The Human Care Association was established in 1986 out of Wakakoma-no-ie in Hachioji-city, in the outskirt of Tokyo. Established 20 years ago, the Wakakoma-no-ie is a day-activity center for people with disabilities run by people with disabilities themselves. It later gave way to the establishment of the first Wakakoma-no-ie, the Second Wakakoma-no-ie, the Mokuba Workshop, the Wakakoma Information Bureau, Raseri, Roba House and the Pao, each created according to the various needs and activities of people with disabilities in Hachioji.
　 As the number of members with disabilities in the Wakakoma group needing personal assistance service in daily activities increased, it became extremely difficult to find personal assistants on an individual basis. This great need finally led to the idea of establishing an organization which would provide personal assistance dispatchment services.
　Because persons with extensive disabilities are so often in the custody of their parent at home and their teachers in school, they are inclined to be not only dependent but also lacking in basic living skills, such as self-expression, communication with others including personal assistants, creative time-spending, and the like. With the aim to remedy such a situation, the Human Care Association was started in June 1986 to launch two major programs, i.e. the provision of personal assistance services and the organization of independent living program.
　The provision of personal assistance services is rendered at present by 15 paid staff working for the Association. Of them 6 are wheelchair users (both manual and electric) with disabilities such as cervical cord injury, polio, and muscular dystrophy. One of the staff members received her training at an IL center in U.S.A.
　The personal assistance service aims at helping persons with extensive disabilities live independently by giving referrals and sending personal assistants to those who need help with daily activities such as moving into and out of bed, taking a bath, toileting, cooking and cleaning. The personal assistants can work at any time as requested. Although, as a policy, they provide the services within the specified length of time which is from 7:00 a.m. to 11:00 p.m., anyone who faces difficulty at night or early in the morning, including those who are with psychiatric and intellectual disabilities or elderly may avail of personal assistance services any time.
　There are two kinds of membership in what we call the Association Service. One is Regular Membership, and the other is Care Staff. Regular members are the service-users who hire personal assistants and receive services, while the Care Staff, who are usually able-bodied, are the ones who provide personal assistance services. All members are required to pay registration fees of 1,000 yen and dues of 3,000 yen per year.
　As for the cost of services rendered, service-users pay 1,000 yen (=US$8.50)per hour, plus the cost of the attendant's transportation expenses to the association's management office. The office then deducts 100 yen per hour from this amount to pay for coordination expenses, and pays the remaining balance to the pertinent care staff.
　The office provides coordination between service users and care staff when needed. It also takes charge of acceptance and payment of personal assistance fees.
　One of the reasons why the pay system for personal assistance service provision has been adopted is that persons with extensive disabilities are forced to make efficient use of personal assistance services, can learn some basics of independent living skills by critically examining their way of life, and learn to give accurate instructions to the assistants.
　The Independent Living Program has three parts.
1. Independent Living Skill Training,
2. Peer Counseling
3. Overseas Training Program.
　The Independent Living Skill Training Program was developed by the Human Care Association in the context of the socio-cultural situation of person with disabilities in Japan. This program is conducted on a group or an individual basis, aiming to enable persons with extensive disabilities to lead better independent lives in their communities, rather than depend on their parents or stay in an institution. A peer counselor, who is also disabled and has already realized an independent life, leads the program and gives support to the participants in their study. Each program consists of 12 regular sessions, one session per week, with an average of 6 to 8 persons with disabilities participating in each session.
The contents of the program are as follows.
1. Goal setting,
2. Identity establishment
3. Health and medical care,
4. Communication with attendants,
5. Human relationships,
6. Management of money,
7. Management of time,
8. Shopping, meal planning and cooking,
9. Sexuality,
10.Utilization of social resources.
　In each session, the peer counselor who acts as program leader, uses such methods as group discussion, role-playing, and going on a field trip.
　An integral part of the program is the training manual, which was published to be utilized at centers and workshops for especially persons with extensive disabilities throughout the country. The English and Korean translation of the manual has been issued, and motivated many persons with disabilities to develop an IL movement in their respective countries.
The Independent Living Program has been conducted for 12 years now. People with various disabilities who are eager to live independently, ranging from students in special schools to those under the custody of parents or institution staff, have participated in the programs.
　In peer counseling, the counseling service is conducted by a peer counselor on an individual basis using the co-counseling technique to help those who are suffering from many problems in leading an independent life within the community. The counselor does not treat persons with disabilities as clients, but rather discusses problems with them as a peer. Here, the counselor's personal experience of being disabled is important.
　The peer counseling program has been organized in more than 30 cities in Japan. Persons with disabilities have enthusiastically participated in the program. In 1988 an intensive course for peer counselors also started. Now, they themselves are to become independent living program leaders.
　Third is the Overseas Training/Study Program, which is organized every year. It is designed to motivate persons with disabilities to lead an independent life through the study of physical and attitudinal barrier-free society and accessibility in foreign cities, such as San Francisco and Berkeley in the U.S., Adelaide in Australia, and Auckland and Christchurch in New Zealand to name a few, as well as their participation in the training at IL Centers, such as the HCIL in Houston, Paraquad in St. Louis, STIL in Stockholm, Threshhold in Helsinki, and IL centers in Germany. These trips have proved to be very fruitful.

Recently , the Association had a seminar on the newly introduced nursing care insurance system. Disabled persons with physical, visual and hearing disabilities and their families in the city attended.

　Our aim is not only to provide needed services for persons with disabilities and the elderly, but also to establish a community-based social services network in which persons with extensive disabilities who are now considered unable to participate in productive activities can get a paid position and to creative work.
　With regards to funding besides the income generated from dues and services rendered, funding support from the local government is crucial. The Tokyo Metropolitan Government has recognized the association's activities as extremely valuable for the future building of a welfare state, and since four years ago, has given us financial aid. This year, the amount of aid we received is 15 million yen. The assistance of the Tokyo government has stimulated Hachioji City to likewise provide subsidy to our activities. However, the amount is very small -- less than 1/4 of the Tokyo grant.
　In the past years, 20 IL Centers have been established in the Tokyo Metropolitan area and some 60 in other cities of Japan, most of whom are learning from the experiences of the Human Care Association and following a similar pattern of development.
　1991 was an epoch-making period for the independent living movement in Japan. Twelve IL centers all over the country have met and decided to establish the Japan Council on Independent Living Center (JIL). It is the first time in our history that the IL movement has got a country-level organ which is expected to give much support to potential IL centers now emerging throughout Japan. JIL plans to do such activities as aforementioned and develop IL movement in other Asian countries in the near future.

For purchasing the English or Korean IL Skill Training Manual, please make contact with the Association. The address is humancare@nifty.ne.jp

(31/3/2000)