ACTIVITIES
OF
HUMAN CARE ASSOCIATION

The following script is in Videos 1, 2 and 3 which are produced
as one set by the Human Care Association in 1999.
The one set costs \10,000. For those who want to purchase,
please make contact with the Association:
FAX 81-426-46 4876 or E-MAIL humancare@nifty.ne.jp.
The price can be discounted for those living in developing countries.



<< 1 STEPS LEADING TO INDEPENDENT LIVING >>


The Wakakoma Day Activity Center where persons with severe physical disabilities come regularly is located in Hachioji, Tokyo. It is the parent organization of the Human Care Association. Many of these disabled people there now enjoy independent living, having received training and help from the Human Care Association.

Let us introduce some of the members to you.

Mr. Sugiura is busy at his computer.

Mr. Kayahara uses a talking aid. He now lives alone with occasional help from a personal assistant dispatched by the Human Care Association. In the beginning he had some difficulty in getting along with his personal assistants but now all goes well.

It was three years ago that Miss Yoshie Suzuki left a nursing home in spite of her family's strong objection. She is now completely adjusted to her life of independent living. After enjoying shopping, Miss Suzuki meets with her two personal assistants, college students, in front of her house and then goes inside with their help. After she gets off the lift, her dinner and bath will follow.

Mr. Minoro Yako is having dinner here with his wife, Yukiko Yako, who also has a disability. Their 5 year old son is on the left. They have been enjoying independent living with the support of attendants for seven years.

Miss Kyoko Morishima lived in an institution outside Tokyo and had been thinking about independent living for four years. Her parents strongly objected to the idea saying that there was no way for their daughter to live alone. After all, she was incapable of doing anything on her own. It has been a long, hard road of persuading her parents to agree.

Today she has come to Tokyo to meet with a peer counselor for her final consultation. She needs to confirm what she has learned about the government services she can receive. Part of her training includes role playing shown here where she practices procedures in applying for such services. Her peer counselor plays the role of a municipal officer while another person plays the part of her personal assistant.

Miss Morishima comes to City Hall, bearing in mind what she has rehearsed in role-playing yesterday. Here she seems somewhat nervous and tense. But she is now a full-fledged citizen of Tokyo, having completed the necessary procedures to register her relocation yesterday.

First she meets the welfare section chief in charge. After a brief interview, she meets her appointed social worker, Mr. Kuma. Miss Morishima speaks slowly but clearly in her own words. Mr. Kuma responds carefully and courteously.

Today a visit is being made to a rental agent who works with the Human Care Association on apartments and housing for disabled customers. The special needs vary, depending on the type of disability. The three essential requirements in this case are: 1. a ground floor apartment; 2. a wide and spacious entrance; 3. willingness to make necessary alterations. The apartment finally chosen has two rooms plus a kitchenette, bathroom and toilet. A meeting with a carpenter who helps Human Care determines what must be done, namely, installing a lift in the entrance, remodeling the toilet and bathroom, replastering old walls.

While the apartment is being renovated, Miss Morishima lived in this experimental training apartment . This is where persons with disabilities go through simulated experiences with the help of a personal assistant until they achieve the goal of independence. An individual program is prescribed depending on the person's needs.
.
Finally, the day of moving arrives. On instructions from Miss Morishima, each piece of furniture is put in its pre-set location. At last, she is in her independent living home.

Miss Morishima comments that people tend to treat disabled people as children. She says that if we want to be treated as adults, we must decide to do things ourselves living independently. She says that is why she decided to get her own independence. Now she is living alone and independently. She can make her own decisions and promote what she likes to do such as shopping and just going around on her own. She is her own boss and happy about it.

Here we are at the supermarket. Enterprising Miss Morishima has ventured into town previously but always accompanied by a personal assistant. Since she needs many hours of support from her personal assistants, she finds a special delight in doing what she can on her own for a change even for only a few minutes. She says how happy she is to find herself doing things unaided in a place she likes such as the supermarket. Now that she has had a chance to browse and choose her purchases, she takes them to the checkout counter.

Next stop: the beauty shop. She heard of a beauty parlor that was accessible and spacious. So she came here to try it out. Now with a new hair style, she cannot help but smile with happiness.

She takes the Keio train to go to the Human Care Association from her own home. Luckily, the Keio train station has an elevator for use of persons in wheelchairs. She uses her control stick in her mouth to press the elevator buttons.

Miss Morishima has been expanding the range of her activities thanks to the training she gets in the IL training program. While everything was new and difficult at first, she now finds that she is not shy to ask a passerby for assistance. She gets her ticket, goes through the gate towards the train and boards it with a mobile ramp provided by the station staff.

For Miss Morishima, cooking at home is another pleasure in her life. And eating is even a greater enjoyment. After deciding on the menus, she instructs her personal assistant who gets the ingredients for her and flavors the food to her liking. Then the cooking is done and she can enjoy her dinner.

After she comes home from the Wakakoma Day Activity Center, two personal assistants come to her apartment and divide the chores between them.

After dinner, they help her check and confirm the next day's schedule. Then they help Miss Morishima prepare to retire for the night, including brushing teeth.

It takes a team of two assistants to transfer Miss Morishima to her bed as it does to help her with her bath. In moving her and getting her settled for the night, they are careful to position her comfortably so as to allow her a good night's rest.

A special important step is to arrange the remote control devices next to her so she can easily reach them with her control stick. Great care must be taken to insure that all devices are within range of her control stick. These include one each for the television, the air conditioner, telephone and light switch. Miss Morishima checks each device with her control stick. All is in order now.

Another long day but in a way, short day is over. Thus, Miss Morishima has surely begun her independent living on her own.



<< 2 INDEPENDENT LIVING PROGRAM >>


The Human Care Association was established as the first IL center in Japan in June, 1986, with the Wakakoma Day Activity Center as its base. Before the Independent Living Movement started in the U.S. in 1972, people with disabilities were expected to continue rehabilitation all their lives to maximize their rehabilitation up to the level of non-disabled people.

The IL Movement changed the whole idea of the lives of the disabled. The new concept involves giving some choice and control to the disabled person to make his or her own decisions in everyday life. For example, should a disabled person spend two hours getting dressed by himself or should he ask a personal assistant to help him so as to allow more time for other activities during the day. This concept of choice of activities and self decisions in everyday life spread from the U.S. to the rest of the world as disabled people left institutions and homes to start their own lives in their own communities.

The Independent Living Center has four rules.
1. 51 percent of the management committee should be disabled persons.
2. The chief executive of management should be a disabled person.
3. Programs and services include all types of disabilities.
4. Personal Assistants, IL programs, peer counseling and housing services should be available and provided.

<IL Programs>

IL Programs are planned on a yearly basis. For group or individual programs, specific contents are planned according to the kinds of problems or needs participants have. Details of individual programs are worked out with peer counselors with due consideration to the needs and desires of the individual participant.

<Human Care Manual>

The IL Skill Training Manual was published by the Human Care Association in 1989. It was translated into English in 1993. The manual was made with the purpose of encouraging and supporting persons with disabilities who pursue independence and wish to fully enjoy their lives.

As you can see, there are ten main chapters in the manual. The manual was made on the premises that the program leader and the adviser in the meetings are disabled peers.

<Group IL Program>

We would now like to introduce group programs. The participants are practicing the "think and listen" method. Today's subject is talking about their own disabilities. By expressing one's thoughts in a given duration of time equally allocated to the participants, one gets to learn how to listen and how to lead in independent living situations.

<Field Trips>

We sometimes take "Field Trips." Using public transportation, participants go on a field trip with a certain purpose, such as shopping, visiting someone, or participating in an event. On the way, participants try to do what they have never experienced before such as checking accessibility, buying tickets and shopping. Through communication with other people, participants increase their social experience. Individual impressions and the degrees of goals achieved are discussed at the end of the trip.

<Cooking>

Cooking classes are held with the active cooperation of a nutritionist and many disabled persons participate in every way they can. Those who have never cooked at home or at an institution try to get cooking experience in each possible way- touching, cutting, boiling and baking. Through giving instructions to personal assistants, they can seek out and try her own preferences in taste and enjoyment. Everyone tries very hard to contribute as much as possible in the cooking processes. After cooking, they enjoy the dishes they have made. A comment of satisfaction was that "the dishes we made ourselves were especially delicious.'

After their meal, they review the day's program. Everyone gives their impressions and comments and tells about how they enjoyed their experience in cooking. These comments are used as reference materials for the next class.

<Role Playing>

For those who have started the process toward their independent life and have visited the Human Care several times, we provide training in appropriate self-expression through role playing. The main subjects included are practicing persuading parents who oppose their children's independent living and also communicating with housing rental agents. They may be a little shy at first, but little by little they become seriously involved and more self-confident.

In this exercise, the lady takes the role of the mother who doesn't agree with her son's wishes to live independently.

Son: "There are too many rules and regulations in the institution. I have no freedom. I want to live alone independently in Tokyo."
Mother: "But how can you live alone in Tokyo by yourself with your disability. Besides, how about money?"
Son: "Its no problem in Tokyo. I'll be able to get services like a helper or attendant. The government will support me financially."
Mother: "I don't agree. I can't believe that you can live alone. It's unbelievable."
Son: "I'll have enough money to live on."
Mother: "It's better for both you and me for you to continue to stay in the institution and not make trouble for many people."
Son: "I'll be okay. I can rely on helpers and attendants."

<Visiting IL Peers>

For those who wish to start independent living in the future and who want to know how it should be done and what is needed, visits to peers who are already living independently are arranged. Then they can talk to their peers in their own apartments, ask many questions and get a lot of good advice. They learn from listening to their peer's experiences in IL, how it was achieved and what the results are. They also learn how their peers are using their personal assistants. After witnessing the daily life of a disabled person who needs a 24- hour personal assistant, the potential independent liver is helped to make up his mind. Thus, IL programs are carried out not only with the cooperation of the counselor in charge but also with disabled peers as role models.

<More IL Programs>

Shopping is one of the most important and popular phases in the program. Here, Mr. Inoue is enjoying choosing what he likes, what he wants, making his own decisions.

Mr. Inoue is severely disabled and needs 24-hour attendant care. He had set his goal toward IL two years ago and through various programs has succeeded in achieving IL. Here are his personal comments.

"My disability is muscular dystrophy so my arms and legs cannot move. I need 24 hour attendant care services. Human Care dispatches attendants,
mostly students, for my 24-hour care service.

I love cooking and eating. I wish I could cook and eat by myself. I want
to controls things myself, like deciding on my menus and shopping. I want
to control my nutrician by myself with my attendants' support.

These days I have many new friends. The lady in the vegetable shop is good to me and she teaches me how to cook. I will try to have more friendships in the community. I wish I could have a job at home."

<Getting Out and Challenging Accessibility>

Elevators are indispensable to Independent Living and have been installed in many places as a result of the advocacy of Human Care and the disabled persons' movement in Japan. Mr. Inoue gets off the elevator and Ms. Tsuchiya who is going to a welfare office gets on the elevator.

Mr. Inoue may have many difficulties in the future. We believe, however, that he will be able to make strong progress in a better life for himself through the experiences of IL programs. We will, of course, continue to support his Independent Living.



<< 3 PEER COUNSELING >>


Ms. Hiroko Akiyama currently lives with her parents. She visited the Human Care Association for the first time one and a half years ago. Today, she is preparing herself to go out to attend a peer counseling course. A wheelchair is not used in her home. So when she ventures outside, her personal assistant together with her mother help her get set up in her wheelchair.

Ms. Akiyama's disability is progressive. As she needs to change her position from time to time, personal assistant services are required twenty-four hours a day. At her first visit to the Human Care Association, her mother accompanied her, pushing her manual wheelchair. Nobody outside the family had provided assistance until her mother hurt her own back. Then she requested assistance from others to start visiting the Human Care Association. Later Ms. Akiyama learned that it would be possible for her to operate a motorized wheelchair.

A wheelchair lift has been installed in the closest railway station. It is a mobile lift attached to a side rail on the stairways. This means she does not need to be carried by station staff members up and down stairways whenever she gets on the train. The lift has also relieved Ms. Akiyama from the stress of being carried by hand. In the beginning, she was extremely upset by people staring at her. Now, however, she no longer cares. Her joy in going out and meeting people is greater than worrying about people staring at her.

Now we would like to tell you about the main principles of peer counseling. Peer counseling was developed in the independent living movement in the U.S. In the 1970s. It is now more than ten years since it was first introduced to Japan. A hundred or more peer counseling courses are organized annually at 80 independent living centers nationwide in Japan.

In peer counseling, when people first meet, they introduce themselves. This is called "building relations". Each person shakes hands all around as they introduce themselves to each other. Personal assistants accompanying them are also introduced at the same time. A peer refers to someone who has had the same or similar experiences. There are several different ways peers can help each other. They range widely from sharing information and knowledge on disabilities to listening to individual emotional problems and offering advice.

The objective of peer counseling is the recovery of self-reliance and the construction of human relationships. The person who comes for advice is encouraged to discuss how they feel about their current situation, what they need and aim at, among other subjects. The purpose of peer counseling is that they can ultimately make strong decisions and rational choices for their own life.

Peer counseling assumes that we all have the following philosophy - "All human beings have creativity, wisdom, joy, love and solidarity in abundance". This philosophy, an intrinsic part of all human beings, is easy to upset, therefore, in order to protect ourselves, we prepare defensive mechanisms like fear and insecurity. As long as we are unable to discuss these hurt feelings and be comforted, we make decisions and take action based on our hurt feelings and sorrow rather than on clear, logical thought. As long as these hurt feelings are not resolved by talking with someone else, the person's actions are filled with anguish and clear, rational thinking does not take place.

Human Relationships in Peer Counseling are developed in this case in a face-to-face Session. Today, the counselor is Miss Nakahara and the client is Miss Kashiwagi. Human relationships in peer counseling are supportive relationships based on love. Support means helping the disabled person gain confidence to change her actions.

A peer counselor has several roles.
1) Listening to what the other person has to say.
2) Encouraging her to build a strong, positive self-image.
3) Assuring her of the confidentiality of the session and allowing her to freely express her bad memories, and by so doing, instilling a desire to overcome the situation.
4) Providing information on and relating to disabilities.
5) Helping her so she can make constructive and rational decisions in her life.
6) Helping her to act on these decisions.

Unless the client feels that the counselor cares about her and is interested in her, she will not discuss things openly. To be trusted by the disabled person receiving counseling, the counselor cannot make evaluations or decisions on her behalf.

Peer counseling aims to aid clients to review a confused psychological state or actions, and to teach them about the skills and community resources that will help the most in making independence possible.

The client's role should also be fully understood as follows.
1) Presenting her situation clearly. Discussing the problems and what she is feeling.
2) Forming a clear image of the problems by discussion and airing her feelings.
3) Changing and fixing her attitude to life by setting goals.

The clearer the situation is understood, the more specific the goals can become.

One technique used in peer counseling is the "discharge" or the release of emotions. Releasing one's emotions fosters the strength to think and act naturally. A confused psychological state is not conducive to rational thinking. Clients should be urged to express their emotions freely in sessions.

This means crying, laughing, shaking, shouting and at times, even yawning. Releasing these emotions is referred to as "discharging". This feeling is essential for human beings to be rational and productive. For many, having a good cry allows them to positively accept the situation they are in and think more clearly. Discharging breaks down hurt feelings and tension and makes possible the challenges of a life previously thought to be not attainable and allows these capabilities to be sustained.

The peer counseling process also includes an important technique called "Think and Listen". "Think and Listen" refers to dividing the time equally between all the participants with each person speaking out loud.

There are four important basic skills involved in conducting good counseling.

1) Listening
Many of the participants have never yet had the opportunity to be heard properly by others. They have been unable to receive advice and be given work with proper consideration given to their feelings and thoughts on life. Listening attentively and carefully will allow them to think through their situation more thoroughly than with counseling that provides only advice.

2) Physical Conditions
The participants are made to feel that they can physically relax at each session.

3) Replying
Overreacting should be avoided. The counselor accepts each of the participants. For example, the counselor will tell them, "I really understand what you are saying", or "Please tell me more about that", or "I am completely on your side"..

4) Accepting
When a participant speaks in an abstract fashion, he is encouraged to talk about the situation more specifically. He is made aware that the circumstances are his alone and he is urged to discuss how to deal with the situation.

5) Making Plans and Developing Them to Meet Goals
After the discussion is over, each participant is provided with information and resources on the problems he or she is currently dealing with. The focus is kept on what resources can be used and what action can now be taken to change the situation.

After the group meeting, the Counselor interviews Ms. Akiyama and asks her questions.

Counselor: What did you think about peer counseling before you tried it? Were you afraid of it? What do you think about it now after you have tried it?

Akiyama: I didn't know what I should do and I didn't know I would have to talk. I'm not so good at talking about myself. I don't have experience in talking in front of other people. I didn't realize that we all have to share our feelings with one another. I thought that it would be enough to listen to other people's opinions.

Counselor: Now after finishing five sessions of peer counseling, do you feel familiar with the process?

Akiyama: In the first session, I thought that it was too much to schedule five sessions. But little by little, I began to speak. Then I started to speak in front of other people without thinking. I still felt somewhat ashamed to speak about myself.. Now I realize that step by step I can appear before others and speak with some confidence.

Counselor: Has your life expanded socially by using the wheelchair?
Miss Akiyama: Before my experience in Human Care, my mother always supported me at home and I almost always stayed home. However, from the time I asked for a personal assistant, I could venture out of my home in my wheelchair. Now that I can manage the power wheelchair, it's great fun to be able to do what I want to do and when I want to do it. These days, I am trying to meet more people and develop personal relations with them. It is good experience for me. In the future, I would like to become more and more social and do something to help other people.

Ms. Akiyama has been able to expand her world in keeping with her capabilities through the experience of peer counseling. The road to independence can be opened up through the support of friends and an individual's own strengths. An enthusiastic approach to life is what will ultimately provide the momentum for society to change. The reform of society, one of the major objectives of peer counseling, will be brought about by each and every person's contributions.

(31/3/2000)