Mutiara provides haven for Down's syndrome victims

For many parents, the birth of a child with intellectual disability is a tremendous blow to their self-esteem. Many parents abandon their disabled offspring who actually deserve parental affection, and the best treatment and facilities available. Often those who care do not have adequate knowledge to treat them properly. Intellectually disabled adults are often considered a "burden" to their families, friends and society. The Jakarta Post reporter Rita A. Widiadana and photographer Mulkan Salmona recently spent a day at Wisma Mutiara, a long-stay home for such people, the first of its kind in Indonesia, and talked to parents and experts. This is their report.

JAKARTA (JP): Donny, not his real name, is happy to be with his friends at this South Jakarta home for the intellectually disabled.

Donny celebrated his 35th birthday last month. Despite his age, he still needs his family to take care of him and provide for his needs.

He was quite happy living with his parents at home until his parents realized that they had become too old and too weak to take care of him properly.

"I'm already 70 and I'm afraid I cannot pay him enough attention. Yes, he has brothers and sisters, but they have their own families," said Donny's father Sukotjo.

Sukotjo, also not his real name, shared a similar anxiety with other parents who have sons or daughters with intellectual retardation, particularly those with Down's syndrome.

Sukotjo was lucky. His friend told him about a long-stay home for intellectually disabled individuals in South Jakarta.

Wisma Mutiara II, the first of its kind here, was established by the Mutiara Foundation in l987.

The idea came from Sahria Hasan Askar, a 78-year-old who has an adult son with Down's syndrome.

The development of the shelter on 1,596 square meters in Gandul village, Cinere cost about Rp 100 million (around US$50,000). The home consists of several bedrooms for its male and female occupants, two workshops and a living room. It also has a large yard.

"My dream was to build a home where the intellectually disabled live happily in a healthy environment," Sahria explained.

The intellectually disabled, she said, are human beings who also have the right to be happy, to socialize and to improve their bodies and minds.

The home is far from perfect, she said. "But at least, we have started thinking about the future of disabled adults," Sahria said.

D. Saragi, the foundation's secretary, said that many parents of intellectually disabled infants and children may wonder what their child will be like when she/he reaches adulthood.

In the past, he said, people believed that the intellectually- disabled don't live long due to mental and physical constraints.

Longer

As a matter of fact, the intellectually disabled are now living longer and are healthy well into their fifties and sixties, he said.

Saragi said in foreign countries, in the past, most children and adults with mental retardation lived in large institutions, away from the rest of the community, to protect them from exploitation and neglect. Parents who did not want their adult sons or daughters to live in such institutions could keep them at home. But this placed a great burden on parents, who continued to worry about what would happen to their child once they were no longer able to take care of him or her, he explained.

"We think of it as a home rather than a boarding house. The concept has worked quite well," he added.

Since its opening nine years ago, the long-stay home has had 17 occupants. It has a staff of 12, including trainers, nurses, a cook and housekeepers. A doctor and a psychologist provide weekly physical and mental examinations.

The cost is about Rp 350,000 per person.

"We treat them as part of our family. They have their own rooms or share with another. To make them feel at home, we allow them or their parents to bring their belongings here," said Mulyana, head of the home.

Activities at Wisma Mutiara II start at dawn. All the occupants get up at 5 o'clock, pray together and exercise before breakfast. At 8 a.m., they get busy. Some of them work in the workshop to produce educational toys and household items. There are sewing, gardening, as well as poultry and fish breeding classes.

"These activities are aimed at creating a more fulfilling life for them," Mulyana explained.

He added that although it is impossible to improve their intellectual abilities, the programs keep them active.

"They also enhance their social skills," said Mulyana.

He said although intellectually-disabled people will always need help to get by in the community, most intellectually- disabled adults can take some responsibility for their own needs and require periodical rather than constant supervision.

Many parents, he said, feel they can look after their intellectually disabled offspring at home.

But Sukotjo admitted that his son needs more than he can give. "He needs a place where he can be happy with his friends. I think this is the right place for him," Sukotjo said.

Dewi, 35, the daughter of a professor, said she is happy at Wisma Mutiara. "This is my second home. My brothers and sisters visit me whenever they can," said Dewi, whose parents died in a car accident.

Saragi explained that parents or close relatives of the occupants are expected to frequently visit their sons, daughters, brothers or sisters.

"This is not a place where people abandon their intellectually disabled children. This is where they can expect their intellectually-disabled children or siblings to stay happily for the rest of their lives. Without the parents' participation, we cannot achieve our dream," Saragi said. (raw)