Passing the torch

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Seasonal Story

The successor of community based rehabilitation “Passing the torch” means to try by every means to pass on valuable things. The expression is respectable but in today’s society where people pursue “winning at the starting line”, it is not easy to really pass on, to help and to teach steadily. However, Doctor Zhang Yixi is an exception. Doctor Zhang has been started his rehabilitation career since 1995, and now he is the founder of the first organization that provides community based rehabilitation service in Guangzhou. The person who had a marked impact on him is Ms. Sheila Purves, the first person who actively promotes community based rehabilitation in China. “I got to know Sheila in 1995 in Tongji in the training course organized by WHO. I studied medical science and had no idea about community based rehabilitation. One of my classmates registered for the course and I thought I was interested and would like to try some work in this field, so I also participated.” He did not expect his life would be influenced by it.

“I felt I was learning more slowly compared to other classmates, yet I continued regardless of the difficulties because of Sheila and other foreign teachers. Their people oriented attitude and special teaching methods were very impressive to me.” These people from two different sides of the earth got to know each other because of the training course. Sheila inspired Doctor Zhang and he became curious and devoted to community based rehabilitation. Doctor Zhang did not manage to practice what he had learnt from the course afterwards, but he volunteered in his spare time after work. “I contacted Guangzhou Disable Persons’ Federation and asked them to accept me to participate in rehabilitation work in communities as a volunteer. As I have been volunteering, I noticed people with disabilities lose lots of opportunities of rehabilitation after they are back home from hospitals, as most of them are just stuck home and there are no community based institutions that help them.” Given what he had seen and heard in the communities, Doctor Zhang empathized

them and became convinced that community based rehabilitation was imperative.

The Hong Kong Society for Rehabilitation

International and China Division

E-Newsletter August 2016

We Care . We Share

International and China Division E-Newsletter (August 2016)

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2 “Something impressive happened in 2003. Our hospital prepared a party in a community for children with disabilities, and more than a hundred children with disabilities came to the party. This shocked me as there are so many people with disabilities in communities who are in need yet have not got much assistance. The ones who can come to the hospital for rehabilitation services are already lucky. I was then so convinced community based rehabilitation can best help people who are in need.” Doctor Zhang has been working in the hospital, and now he also participates in community based rehabilitation, which enables him to grasp the real needs of the service receivers in the communities. He also realized that community based rehabilitation is the final solution after medical interventions. “Hospitals aim to treat diseases, yet community based rehabilitation can adopt a variety of means, such as study and growth needs for children, and employment needs and social participation for adults. We should try to really understand the situation for people with disabilities. I think we cannot go far with assistance from hospitals only.” There were still lots of difficulties in promoting community based rehabilitation, despite ardent hope. Again, Sheila offered her help . “It was very difficult to carry out community based rehabilitation in Conghua in 2001. However, Sheila came to train our staff. We received support from Sheila and Hong Kong Society for Rehabilitation again during 2004-2005. I went to Hong Kong to learn about mental rehabilitation, conductive education and service operation, which broadened my views on community based rehabilitation in mainland. I could hardly continue in those difficult days without Sheila’s support.” In 2007, Doctor Zhang established “Guangzhou Renren Community Service Center” in Guangzhou – The first private non-enterprise unit which aimed to provide community based rehabilitation services. It engaged in community based rehabilitation work as a formal organization. However, as the organization founder, Doctor Zhang encountered more challenges. “It is not easy to do community based rehabilitation work, as the operation fund for the organization is not stable. I have to think about the fund for the second half year when I just receive the fund for the first half year.” Even though it was not easy, it was still an important milestone for Doctor Zhang. Doctor Zhang has rich knowledge of rehabilitation and is also skillful, yet it requires more than only rehabilitation knowledge to engage in community based rehabilitation. “In practice, it requires a large number of professionals to respond to the various needs of people with disabilities to reach better results, for example psychology, employment, education and livelihood, etc. Not only theories but also practice is needed to fulfill the real needs of people with disabilities. Therefore, the cooperation between different professions is very essential and it is not possible to meet all needs of people with disabilities with only one professional no matter a therapist or a social worker.” “In recent years, we pay lots of attention to the promotion of barrier free communities. On one hand we encourage people with disabilities to go out and travel more to learn about themselves, in order to break the environmental barriers and their own psychological barriers. On the other hand, we want more people to realize people with disabilities are members of the society and their capabilities should be acknowledged. It is limited how much an organization can do in such a promotion; however, we can still have some achievement if we keep trying. For instance, after a long period cooperating with subways, buses and volunteer organizations, their understanding and attitude towards people with disabilities have indeed changed.” This is what we call “constant effort brings success”. When mainstream society lays stress on rational thinking and success indicators, Doctor Zhang thinks it is not bad to make a decision based on one’s intuition. “I decided to engage in community based rehabilitation based on my intuition and have been doing relevant work for 20 years. I have had difficulties but my achievements have also been inspiring. I will continue the work. Sheila’s teaching and her way of getting along with people is a life time inspiration to me and I will always learn from her.” “As for the expectation for the future, I hope we can have better work conditions and resources and

International and China Division E-Newsletter (August 2016)

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3 receive more support at policy level, so that we can carry out our work more smoothly. I also hope we can all grow from our work. As for personal expectation, I hope I can hand over the organization to my colleagues once the organization runs stably, so that I can have enough time to travel around to exchange with people and organizations that devote themselves to the promotion of community based rehabilitation. I would also like to share my experience in promoting community based rehabilitation in mainland as a volunteer. I believe it might inspire some people. Meanwhile, I also hope to travel to different places to look at different landscapes and experience different cultures.” Doctor Zhang is very happy and satisfied now as the “torch” of community based rehabilitation in China.

(Gigi Yeung)

Footprints of Volunteers

Teamwork in potty training It is natural for children to understand toileting; however, it is not easy for children with special needs to use the toilet freely because of their own capacity limitations and the environment of orphanages that raise children in a centralized way. Liu Lei is our former student and also a therapist of the rehabilitation center of Chengdu Children’s Welfare Institute. Following is her experience of potty training with a child. I did potty training for a child with cerebral palsy from February to June this year. I used teamwork a lot and achieved good results. The child was a six-years-old boy called Wang Xiaoli. He had cerebral palsy (spastic diplegia) and had been having rehabilitation trainings for two years in the welfare institute. He still used diapers and his parents wanted me to help solve his toileting issues, so potty training was part of the training content. I was quite confident in training him to go to the toilet, as he could sit alone and stand and walk when he held the rail. He could also take off pants by himself and walk with the assistance of a rear-mounted walking aid (even though his steps were not in a good order). However, I was not at all confident in potty training as he was not good with his cognition. He was like a child at one year and a half years old. He had no concept of toileting or hand washing. The good thing was that his parents were supportive and cooperative. I started to plan the training and wanted to make an attempt. I set a goal for the child, expecting him to reach the objectives below after a year of training:

1. Be able to control urination and defecation 2. Be able to go in and out of the washroom with a crutch 3. Be able to stand up with one hand holding the rail and to take off and put on pants by himself 4. Be able to clean himself afterwards with moderate assistance

As the child went to the rehabilitation center at daytime for conductive education, speech and physical therapy and stayed home for the rest of the time, it required cooperation of different parties, including his parents, speech therapist, physical therapist and teacher for conductive education. They needed to talk together about the details of the plan and take individual responsibilities. Action for the first week: Used observation form for the child’s urination and defecation and found out the pattern. This was done by the parents. Other therapists also recorded them down and the data was summed up in one form. The orthoptist organized and transformed potty chair and ladder back chair for him. The second week: Used potty training form based on the observation form. Led by the parents, the teacher for conductive education and physical therapist separately, the training took place in the home toilet and the toilet where conductive education took place. The teamwork was not in a good order at the very beginning. It was either someone forgot to make the child use the lavatory pan, or someone else forgot to record. After supervision and coordination, the team members communicated more in time and helped each other, and the cooperation went more smoothly. There were five trainings at the daytime and each time the child used lavatory pan for no more than 10 minutes. He received compliments for each success

International and China Division E-Newsletter (August 2016)

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4 and the setbacks were ignored. The child was taught to clearly speak out his wish to defecate. He was very reluctant to use the lavatory pan, and there was an adult accompanying him each time. They spoke to the child and played with him until ten minutes were up. The training was seldom successful, but we all stuck to it. After one month, the child could control defecation and express himself. The urination training was also gradually improving. With continuous adjustment and increase of the time using the lavatory pan, the child no longer needed diapers at night after four months. The child also progressed in cognition and toileting at the same time. The cognitive training was led by a speech therapist. Concepts such as “go to the toilet, toilet, underwear, trousers, urinate, defecate, wash hands” were the focus of the training. The training activities including walking with a crutch, putting on and taking off trousers and washing hands were led by a physical therapist. Team members discussed together and made a plan. Everybody used the same standards to guide the child during the execution of the trainings. After four months, the child could take off his trousers by himself and put on the trousers with a little assistance. He knew where the washroom was and was able to enter and exit the washroom. His steps were in better order. He remembered to wash hands after toileting and was able to do it independently. The initial long term goals were basically reached within four months. All the team members were very happy, especially the child and his parents. I learnt a few things from this training:

1. The goals of the rehabilitation should be set based on children’s participation in the activities (for instance toileting). 2. Children’s capacities are beyond our imagination and they should be offered opportunities. 3. The action plan should involve different departments and teamwork and should include all aspects of children’s daily life and study. 4. The goals and action plan should be made and approved by team members. 5. There should be a focal person who can coordinate the teamwork 6. Adjust the goals and action plan based on the actual execution.

Our training has not yet ended and our team will keep working hard towards our new goals. This successful experience has given us more confidence and we are willing to provide rehabilitation services to more children with disabilities using this method of teamwork.

Colleague’s story

Get out, to see the sky, the sea and the world Niuniu is over 18 years old and no longer a little girl. Even though she can only make a few steps with the walking aid, she can actually move around at home with her wheelchair. She can also dine, wash up and use the toilet by herself. However, she still needs assistance from her mother when she bathes and dresses up. She has learnt to use the internet and she chats with people online. Her mother notices there is no clear purpose most of the time when Niuniu surfs the internet. Niuniu is an introvert and seldom lets her needs being known, but she does express her feelings when there is something she really does not like. Niuniu’s mother remembers it was quite convenient for Niuniu’s family to take train rides when Niuniu was little, because of her parents’ work. However, the family no longer travels since Niuniu reached 10 years old. One time, Niuniu’s mother took her out, and they were rejected by a taxi driver because of Niuniu’s wheelchair. This was discouraging and the mother no longer feels like going out as Niuniu is getting too heavy

International and China Division E-Newsletter (August 2016)

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5 for her to carry. Niuniu also refuses to go out when she suggests it. Niuniu’s mother believes this is due to Niuniu’s sense of inferiority. At the beginning of this year, Niuniu’s mother decided to take Niuniu to Dalian by plane. As a matter of fact, Niuniu’s mother had never traveled by plane before and was quite worried about taking Niuniu with her. However, she took action once the decision was made. First she bought a new wheelchair for Niuniu for easier transportation. She also consulted different people on the issues about taking planes, such as the check in procedures of a wheelchair etc. Niuniu was no longer against the idea. Her mother noticed Niuniu browsed a lot online about Dalian. The departure day finally came. Niuniu and her mother arrived at the airport several hours ahead and it went very smoothly. There were staff at the Information Desk helping with passenger’s declaration for special needs. Once the declaration was finished, Niuniu was seated in a special wheelchair arranged by the airport and went through the restricted lane for check-in and security check. The staff sent Niuniu directly to her seat and helped her settle down. Niuniu’s mother booked the tickets for an evening flight considering the prices. Niuniu was seated in the middle seat and did not pay much attention to the view out of the windows. She took the airport wheelchair when the flight landed and picked up her own wheelchair from the Luggage Claim. It was a fine first time experience with planes. Niuniu and her mother checked in the hotel with the help from local friends and the mother’s tension was finally relieved. Niuniu was exhausted and felt asleep. Niuniu’s mother took Niuniu out the second day. When waiting for a taxi, the mother was feeling uneasy. Would any taxi driver stop when seeing Niuniu sitting in a wheelchair? It was not a problem. The first taxi stopped and the driver came out to help. Niuniu’s mother said it was like helping with an ordinary luggage without any complaint. The smooth trip brought Niuniu and her mother good mood. The two of them visited Xinghai Square and Haibin Park. Niuniu liked the Tiger Beach the most. She smiled so nicely in the photo. However, Niuniu’s mother still felt a bit regretful as Niuniu did not really “feel” the sea as the wheelchair could not work on the beach. Niuniu and her mother returned home happily and everything became easier. Niuniu told her mother in the airport that she would like to be seated at a window seat. Being able to see the world brought more inspirations, didn’t it?

（Huang Weiping）

Division Updates

Cyber Run 2016 We raised HKD918,177 in the past year, which was used to facilitate the development of rehabilitation services in Mainland China. Our services covered Jiangxi, Shanxi, Hainan, Qinghai, Ningxia, Guizhou, Gansu, Hebei, Shaanxi, Inner Mongolia, Guangxi, Sichuan and Tibet. Other than face to face training program and clinical supervision, we request trainees to have case follow up and we cultivate good trainees by providing them opportunities to teach, observe and assess in other work units, with the aim to enhance their analytical and teaching skills. And such second level training would further strengthen the rehabilitation program locally.

International and China Division E-Newsletter (August 2016)

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6 In addition, we believe active participation and joyfulness are two most important elements for all children. Last year, we have subsidized 12 play days for 576 children and 708 adults participated, while most children were with special needs. Children enjoy playing games. Meanwhile, such experiences enhanced the concepts of play for the organizers and it arose the public awareness of children with special needs. CyberRun will be held on November 27th (Sunday) this year. We sincerely invite you to JOIN our sunset jogging / walking to Cyberport and support cultivating more community rehabilitation workers and enabling people with disabilities to walk further and integrate into society.

Enquiry : 2855 9360 / 2817 2651

Email : cyberrun@rehabsociety.org.hk

Website: www.cyberrun.hk

Facebook : www.facebook.com/CyberRunforRehab

(Carol Kwong)

Donate Now Your donation and support will help us to provide more professional trainings to mainland rehabilitation

workers which will benefit more persons with disabilities and persons with chronic illnesses.

Donation line: 2817-2651

The Hong Kong Society for Rehabilitation

International and China Division

Email﹕int_china@rehabsociety.org.hk

Tel﹕(852) 2817-2651

Fax﹕(852) 2818-0601

Address﹕Room 16, 1/F, 7 Rehab Path, Lam Tin, Kowloon, Hong Kong

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