Finding sustainable ways to care for children with disability

I WOULD like to commend Datuk Dr Amar-Singh HSS for giving a very comprehensive account of life for children and people with disability (PWD) in “Lifelong caring for disabled” (The Star, April 16).

As the parent of a 32-year-old son with autism, I agree that it is a lifelong duty to care for a person with disability. Our son still depends on us for almost all of his daily living needs.

When it was time to decide on his schooling, we chose the services of an NGO over enrolling him in school. We knew the teachers in school would not be able to cope with him because he is also hyperactive.

Reflecting on my son who did not get any preschool exposure to learn living and communication skills, I subsequently advocated for our school system to start two years earlier. I reasoned that young children should be given the opportunity to interact and engage in social communication with children of their own age. The situation is more pressing now especially with most families having one child or two only, and with both parents working as well. We should concentrate on the “learn through play” curriculum during these two years of schooling to build their confidence.

I agree with Dr Amar that early intervention is crucial in a PWD’s early development. He also correctly observed that almost all early intervention centres are run by NGOs, which charge a fee. We were already paying RM200 for a half-day session in the early 1990s, and I believe the fees are higher now and would be beyond the means of many families.

The proposal to start school two years earlier is being supported by quite a lot of parents with young children. They also feel that the two years’ exposure would prepare children for academic learning in Year One in an inclusive environment.

I am now in the fourth stage of Dr Amar’s broad outline of a PWD’s life. My son has been in sheltered employment for 15 years now, thanks to the self-reliant efforts of a group of like-minded parents who believe in operating a sheltered workshop.

We formed Pertubuhan Keluarga Orang-Orang Bermasalah Pembelajaran (PERKOBP) solely to provide vocational training to our young PWD aged 16 years and older. We reasoned that if our PWD cannot go out to work, we might as well bring work to them, and the idea of employment training and sheltered workplaces came about in 1995.

We realised that sustainability can only be achieved by working in small groups. Through our experience gained over the years, we found that having between 60 and 80 trainees is a good size to run a sheltered workshop. We also discovered that all of our products were mainly sold internally to parents. This led us to work on another sustainable model, that is to have a sizeable internal customer base that would buy our products. We then added more vocations to our sheltered workshop to provide job variations for our PWD.

While it is true that most of the responsibilities in caring for our PWD are being shouldered by parents and NGOs, I must say that our Social Welfare Department (JKM) has also introduced many programmes for PWD. I especially like JKM’s community-based rehabilitation programme as well as its Taman Sinar Harapan facility, which caters to PWD from the B40 category. These facilities have been around for a long time. All we need now is for JKM to provide the necessary thrust to revamp these entities so that they can benefit a wider group of PWD.

Until the above can be truly realised, parents of adult PWD could emulate PERKOBP’s model by operating on a small scale to provide supported employment and group homes for their special children.

CHNG CHENG HUI Puchong, Selangor