On a clear and crisp mid-October day, 13 teachers and four parents at Hsinchu's Sunrise Opportunity Center are taking 27 severely to profoundly mentally disabled clients on a long-awaited overnight visit to Nantou's Formosan Aboriginal Culture Village.

The clients range from ten to 40-plus years of age, and include wheelchair-bound victims of cerebral palsy, victims of spinocerebellar atrophy who need assistance walking, and epileptics who wear protective headgear to prevent injury in the event of a seizure. Some of them have neither traveled nor stayed in a hotel before, and a few even inadvertently wet themselves on the bus. But once they spread out over the park, the anxious expressions on the group members' faces turn into bright smiles. Holding the hands of their teachers, they begin exploring the vibrant world around them just as giddily as any child unencumbered by disability.

The annual fall trip is a demonstration of the faith that the students, their teachers, and their parents have in one another. It is also a manifestation of the Sunrise Development Center's highest ideals: respect for life and the belief that physically and mentally disabled people have the same right to the pursuit of happiness as those without disabilities. But realizing this idea requires more than just patience and compassion.

Located in Hsinchu, the Sunrise Opportunity Center provides services primarily to the severely mentally disabled. It currently delivers daycare services to some 100 children and adults.

The compassion of the center's teachers was sorely tested in 2007 by a severely autistic 18-year-old youth named Bibi who had been with them for about a year. Bibi suffered from violent mood swings and would strike at people when angry. At 173 centimeters in height and more than 90 kilograms in weight when he first came to the center, Bibi's blows hurt. The center, which itself only provides daycare, had found an efficiency in the community and installed an air-conditioner for the boy, who didn't tolerate heat well. The arrangement was less than ideal. When Bibi had one of his occasional bouts of sleeplessness, he was prone to destroying the furniture in his apartment. For safety reasons, the center also had to shuttle him to and from his apartment by himself, using an eight-passenger minibus with a safety-glass barricade separating the driver from the passenger area.

Mentally disabled people who have trouble expressing themselves in words use picture cards to express themselves to those around them, thereby avoiding unnecessary conflicts and misunderstandings.

Temper tantrums

Bibi's severely violent behavior pre-dated his entry into the center. The family had agreed when he was born that they wouldn't shy away from allowing people to know that they had a severely mentally disabled child. "Our family's true friends were able to accept this child," recalls his mother. But when he came along on visits to other people, he would take toys and food from the other children. People who didn't know about Bibi assumed he'd been badly raised and created awkward situations when they reprimanded him. But Bibi's parents didn't give up. They bought a piece of land in the mountains where Bibi could run around and let off steam, and used to invite friends to bring their whole families along to have fun on holidays.

Memories of a beaming Bibi playing barefoot in the grass remain fresh in their minds even today. But the violent blows he began striking as a teen soured his relationship with his parents and caused his mother a great deal of mental anguish.

"Changes in my husband's job meant he was often away on business," she recalls. "My older son went away to school as well, so most of the time I had to deal with Bibi alone." Worried about her safety, the family bought her a stun baton. "Bibi couldn't talk and didn't really seem to understand what was going on around him, but he recognized the stun baton from the first time I used it. From that time on, he'd erupt every time he saw it. It scared me, but also pained me. I just couldn't take it anymore."

Medical science has difficulty explaining where these emotional outbursts, common among the mentally disabled, come from. In any case, Bibi has made amazing progress to reach a point at which he no longer needs to be separated from other clients, and is able come along on a trip. He's also slimmed down to 72 kilograms, and because he is emotionally more stable and better able to concentrate, he has been able to start music therapy and cognitive training.

His stunning progress isn't a miracle, but the result of the hard work and persistence of the people at the Sunrise Opportunity Center. It also owes much to support the center has received from the First Social Welfare Foundation's First Behavioral Workshop, which became involved in his case last September.

In a classroom at the Maria Wufen Caring Home a group of children does balance, strength, and coordination exercises under the guidance of the teachers.

Crucial support

Because disabled people's brains are not fully developed, their cognitive and social skills abnormal, and their expression of inner frustrations inhibited, they are prone to severe emotional and behavioral issues. Moreover, the more profound their disability, the worse their emotional and behavioral problems can be.

And it's not only the parents who have trouble coping with these behavioral issues. Even care institutions with counselors and social workers on staff have difficulty, leading to high turnover rates. Responses to these problems are also often ineffective and inappropriate, and include beating, scolding, and confinement.

The First Social Welfare Foundation (FSWF) established the First Behavioral Workshop in July 2007 in an effort to address these issues. The workshop assists institutions in dealing with clients suffering from severe emotional and behavioral problems through itinerant counseling and onsite involvement. The program provides its services at no cost to the institutions; the UBS Group provides all of its funding.

Long an "industry leader," FSWF also functions as a kind of "R&D department" for other organizations that care for the disabled. In addition to operating eight well-equipped daycare centers in Taipei City and County, its mission is to train professionals and disseminate knowledge.

The workshop, which was assembled by FSWF director Denise Lai, a special education worker with many years of experience, consists of psychologist Shi Hsien-chuan in a consulting role, psychiatrist Lin Liang-yin and behavioral counselors Kuo Sze-chiao and Chang Wen-yan, as well as a behavioral analyst and a social worker. Team morale is very high.

"The first step in the process is to put yourself in their shoes," says Lai. "You treat them as 'people' with all the normal emotions rather than as 'animals' in need of stringent controls." She explains that counselors have to seek out the hidden "abilities" underlying their behavioral problems. For example, children that turn over plates when sitting at the dinner table probably don't like the food on the plates and really don't appreciate nor understand why the adults by their sides are urging them to eat it. Once counselors understand the situation, they can note emotional precursors and ask questions before behaviors emerge. They can also train their patients to express themselves via picture cards, enabling them to move beyond simple refusals. Once patients learn to communicate better, you can teach them how to choose foods they like, increasing their autonomy. Treating conditions properly sometimes also requires cooperation during the counseling process with experts from a number of fields, including psychiatric drugs, consultation, and special education.

Mentally disabled persons are more likely to experience frustration and psychological distress than their non-disabled counterparts. And, because they have greater difficulty expressing and dealing with these issues themselves, they need more tolerance and assistance from those around them.

"You changed him into an angel"

The Sunrise Opportunity Center was among the first organizations to benefit from the program. Before they began working with FSWF, workers at the center had tried everything they could think of with Bibi, including close observation of his behavior, filling a schedule with his favorite activities, discussing with Bibi's parents whether his emotional disability should be treated by a medical institution, and evaluating the medical option. While pharmaceuticals lengthened the intervals between Bibi's emotional outbursts, those that he did have were as frighteningly intense as ever.

Then Sunrise Opportunity Center sent staffers to an FSWF training session and picked up an idea: "Pharmaceutical treatments require an extensive observation period if they are to be effective." "We wanted to draw on FSWF's expertise to integrate caregivers' differing opinions," says Hung Mei-ling, head of the center's development team. She explains that prescribing psychiatric pharmaceuticals is something of an art. Getting it right requires that the doctor have sufficient understanding of and interaction with the patient. Unfortunately, Sunrise Opportunity Center had no psychiatrists on staff to treat its 100-plus clients. When a doctor at the outpatient clinic saw that the drugs were giving Bibi tremors and a dry mouth, he cut the dose. Frequent adjustments to Bibi's medications resulted in still more violent outbursts and endless frustration for the frontline care workers.

Once FSWF became involved, it first used long-acting injections to maintain the pharmaceuticals in Bibi's blood at appropriate levels. It then consulted with a dietician about bringing down his weight. It also applied the empathy and response techniques used in all varieties of behavior management. Six months of this multi-pronged approach brought about real changes. "Bibi's expression became gentler," says Hung. "He began to smile. His case has given us a greater sense of achievement than any other since we began providing services."

"Thank you-you changed my son from a devil into an angel!" exclaims Bibi's grateful mother.

FSWF's primary objectives in this mission were to reduce the amount of fear that attended Bibi's interactions with the center and his parents, and to build confidence in the child's potential to make progress. The use of drugs was predicated on the idea that they would help reduce the frequency and severity of Bibi's emotional issues, making it easier to proceed with positive behavioral management and cognitive training.

Chang Wen-yan (far right), a behavioral counselor with the First Behavioral Workshop, and the staff of organizations that work with the workshop discuss cases on a regular basis, comparing notes and sharing their experience with one another.

"She's not bad!"

FSWF also provides guidance to the Maria Wufen Caring Home established by central Taiwan's renowned Maria Social Welfare Foundation.

The Wufen Home provides care to severely and profoundly mentally disabled people, and has a high percentage of patients with cerebral palsy. Because it is a round-the-clock live-in care facility with 135 clients all aged over 16, workers here have a tremendous amount of responsibility.

"It was only after FSWF got involved that we realized that when teachers said 'bad child' it really meant 'creative talent,'" laughs Tsou Li-chu, a care worker. At that time, one of the carers' biggest headaches was a girl named A-ping, who snatched food, created pandemonium during meals, and generally made everyone nervous. "We thought she had little self-control and intentionally made trouble. [Chang] Wen-yan, on the other hand, thought she showed ability and recommended that we teach her to push a buffet cart. She surprised us by not snatching any food the first time she pushed the cart. Perhaps it was because she didn't have a free hand or because she was proud to have been given 'control' over all the food. These days she even washes dishes."

"Wen-yan made us realize that teachers needn't be slaves to these 'little devils' any longer. If given a task, taught, and encouraged, they can really do things," says Tsou with a touch of pride in her voice.

The idea underlying "positive behavioral support" is this: you foster appropriate behaviors and redirect inappropriate ones, thereby improving the quality of the client's life.

Every spring and fall, the Sunrise Opportunity Center takes a number of its clients on their first trip outside of their hometown.

"Gentle teaching"

"We used to use too many negative prohibitions like 'don't' and 'can't,'" says care worker Wang Kui-hsing. "When we saw a client act in some way, we'd become anxious that the client was going to do something wrong. We were also concerned about hassles and unwilling to constantly clean up clients' messes. Mentally disabled people are especially sensitive to mood, tone of voice, and gesture. When you meet hardness with hardness, you produce 'bad children.'" Wang adds that this is why he really likes to joke with his colleagues at work. "If we're happy at work, the kids pick up on it and relax." Nonetheless, he admits that it is far from easy to stay upbeat all the time, and not to get flustered when things go awry.

Liu Kui-chen, another care worker, says, "Now that we know about 'gentle teaching' and 'mood-curve development,' when we see a client's expression go a little off, we gently ask whether they want to do something. Over time, the clients gain a sense of security and confidence, and will themselves go to the teacher if something comes up."

Liu says with a laugh that she even deals with clients wetting their pants and worse with equanimity. She's even a little pleased by these situations because constipation makes clients uncomfortable, which affects their mood. In the same vein, "Clients with headaches are often unable to tell you about it. Instead, they beat their heads with their hands. People who don't take the time to understand mistakenly think that they're crazed and violent."

Speaking about the Wufen Home experience, behavioral expert Chang Wen-yan says there is nothing esoteric or mysterious about the techniques that FSWF teaches to care organizations. It is simply that when an institution's frontline care workers are shut up with their clients all day, it is easy for them to become frustrated and apathetic, which can lead to a vicious circle of negativity. Moreover, being right in the midst of things, they are too familiar with the environment and miss the effects of small changes on their charges. The workshop's mission is therefore not only to assist in developing behavioral management strategies for individual clients, but also to use this process to help workers reaffirm their sense of self-worth by making them better observers and better able to deal with knotty situations.

Caring for a mentally disabled person means providing support to the whole family. In Taiwan, care for the mentally disabled has gradually transitioned from nursing and isolation to a focus on developing the client's potential. The new model stresses matching the living environment to individual capabilities. In the photo, a cerebral palsy sufferer is concentrating on folding diapers.

When caregivers collapse

Though FSWF provides guidance on cases primarily to institutions, social workers employed by city and county programs are also greatly in need of guidance and support.

Today, a Taoyuan County social worker is leading a group of workshop personnel to a private home in a rural township to see a mentally disabled girl by the name of Yu-chuan (not her real name) discovered by the social worker on a home visit.

In addition to her mental disability, the 40-something Yu-chuan has suffered from schizophrenia since her youth. Her mother was her first primary caregiver, but when she died 20-some years ago, Yu-chuan's sister Yu-fen (not her real name) took over. Unfortunately, she too became ill from the pressures of long years of care.

According to Yu-fen, the family sought medical treatment for Yu-chuan several times. But when Yu-chuan later refused to leave the house, shouting herself hoarse and clutching at things to stay inside, it became impossible to get her to the hospital. Yu-fen, who had only a middle-school education and no steady work, had no idea how to apply to the local psychiatric hospital for at-home care. In her efforts to care for Yu-chuan and rectify her abnormal behaviors, Yu-fen spent nearly 24 hours a day with her sister for several years, pushing herself to the brink of a breakdown.

When FSWF got involved, it carried out a detailed onsite evaluation and helped connect the social worker and Yu-fen with a nearby medical agency. It also discussed the objectives, effects, and side effects of psychiatric drugs at length with Yu-fen and encouraged her to allow her sister to continue receiving treatment. They explained that once Yu-chuan's condition stabilized, they would train a home-care worker to help Yu-chuan regain the ability to care for herself and build an ordered, healthy life.

Bibi (left), who has gradually integrated into his environment, holds onto a daycare worker as he rides a mini train again and again.

A broader vision

The First Behavioral Workshop's existence is not only a testament to the determination and dedication of a group of people. It also represents a paradigm shift in Taiwan's mental disability care and social practice.

Looking back at the last year and a half, Chang says candidly, "Sometimes so-called positive behavior management is simply a means of persuading workers to understand and accept. Mentally disabled people's behaviors are likely to persist for a lifetime. If they aren't threatening other people's safety, why can't we be more tolerant of them?"

For example, autistic children often exhibit stereotypy. Children with attention-deficit disorder are easily distracted, and while they often start tasks with a bang, they usually finish with a whimper. Children with sensory-perceptual abnormalities often have especially acute senses of touch or hearing and may therefore weep and wail as if being stabbed when dressed in new clothes that feel different than their old ones.

"The symptoms above don't themselves constitute abnormal moods or behaviors, but if inhibited or if the sufferers are blamed for them, negative emotions can accumulate, eventually giving rise to inappropriate behaviors," says Chang.

She cites a recent case as an example: an autistic child with a propensity for shredding fliers and magazine pages would stuff any paper he spotted into the pockets or legs of his pants. In fact, he often had so much paper in his pockets that he had a hard time walking. But this was an expression of his fascination with the texture of glossy paper and with the brightly colored images, and it also gave him a sense of security. Preventing him from doing it only worsened the behavior.

The positive reinforcement strategy for this situation was to give him a medium-sized bag that hung from his neck and could be used to hold paper, sew up his pockets, then use paper rewards as a means of encouraging participation in other activities and interests.

Enabling mentally disabled persons to grow up in a happy environment gives them greater confidence and makes them better able to deal with frustration. This results in fewer abnormal moods and behaviors.

Change begins with ourselves

Educating Peter, a 1992 film by Thomas C. Goodwin and Geraldine Wurzburg that won the Oscar for Best Documentary, tells the story of a mentally disabled third-grader in an ordinary classroom. First Behavioral Workshop often shows the film for educational purposes.

At the outset, Peter's fidgetiness and tendency to hit others are a real problem for his teacher and fellow students. After a difficult and exhausting week, the teacher decides to have the class address the problem together. After winning the students' cooperation by talking to them, she puts the focus on encouraging positive behaviors and increasing tolerance for disruptive ones; Peter isn't given the cold shoulder in any class. After two long and eventful semesters, he becomes a better student, gains more control over his behavior, and makes some friends.

A ten-year-old classmate of Peter's sums up the year by saying: "The changes in Peter were a response to the change in our attitude towards him. We learned how to set our moods aside to help him. Maybe we really taught him some things. We always thought we were teaching Peter, but really Peter was teaching us new things, including how to think, and how to understand and respond to problems."

During an October parental study session at Hsinchu's Sunrise Opportunity Center, Bibi's mother had encouraging words for new parents. "I was worn out and terribly anxious the day I brought Bibi here," she said. "But Director Hung told me that I wouldn't be caring for my child alone, that there would be a whole team of people here helping me. I now know: if a parent's greatest joy is watching their child grow, my child has simply extended that growth period, allowing me to enjoy it a little longer."