Educating Janna


“WHY should I pay for my child’s education while others get it free? I also pay tax what!” Rafidah Rafizah Ahmad said in exasperation.

We were chatting about the Budget 2016 announced by the Prime Minister recently, the rising cost of living, and the state of education for disabled people in the country. Her 10-year-old daughter, Izdihar Janna, has cerebral palsy. It is a condition of the brain that affects movement, coordination, posture and learning.

“Her education fees alone costs RM2,000 per month in total,” she continued. “Tuition costs another RM100.”

According to Rafidah, some mainstream classes in public schools do accept those who are physically disabled. However, this is at the discretion of the school management and normally only those with mobility impairments are accepted, especially those with good hand function and no speech problem.

With such few options left, parents have to move from one place to another to look for a mainstream school that is willing to accept their child. Even then, if they manage to find one, there are no teaching assistants to support the student who may require additional help in their learning and tasks.

The Malaysia Education Blueprint 2013 to 2025 has provisions to cater to students with specific needs such as those with physical and learning disabilities. These include the support by a network of counsellors, therapists and teaching assistants. However, these have yet to be translated into practice.

“Schools here don’t have integrated therapies. I either have to take her to the hospital or private therapists. She will have to skip classes on those days as a result,” Rafidah added as she mused over the quality of education in Malaysia for children like Janna.

She had approached some schools where she requested the teachers to help recommend Janna into a mainstream class or at the very least partially inclusive class but was left disappointed each time.

When Janna was 7 years old, she joined the Special Education Integration Programme (PPKI). The teachers left her alone doing nothing during writing lessons and outdoor activities because they were not trained in handling children with cerebral palsy specifically and on the usage of assistive devices. Janna felt isolated and cried each time she had to go to school.

With her daughter’s wellbeing affected like that, Rafidah decided to transfer her to another school further away but runs the same programme. By the end of Standard 2, one of the better teachers was transferred out only to be replaced by one that did not show much commitment to the welfare of his charges. The students were mostly left idling in the class.

As a last resort, she decided to enrol Janna into a private school near to where they lived. Although the fees are expensive, there are occupational therapists and physiotherapists in addition to teachers for academic subjects where Janna is given one-to-one attention. She got to learn new skills like music and recite the Koran, among others.

In between attending private school, Janna also joins a centre that provides Conductive Education, known as CE in short. This is a system that utilises a wholesome programme of learning and playing that involves physical, intellectual and social activities.

“Janna loves it because it is fun,” Rafidah shared. “Both private school and CE curriculums complement each other and make the brain work better.”

“The only problem is that CE clashes with her classes in school. Janna’s classes are in the afternoon because she has many other activities in the morning like therapy appointments, horse riding and boccia.”

With a tight schedule like that for such a young girl, I asked Rafidah if she is overloading her daughter.

“She enjoys them,” she said. “There are days for her to relax too. I have already consulted a clinical psychologist about her schedule. We were accessed whether Janna is under- or over-stimulated. So far, it is still manageable.”

Giving a disabled child a good education and a better quality of life needs commitment, especially patience, time and money. Rafidah left her promising career as an engineer to devote her time on Janna’s education, co-curricular activities and treatments.

The RM700 that she spends monthly on petrol and another RM200 on toll are an indication of the distance she has to travel. Hydrotherapy sessions cost another few hundred. That doesn’t include rehabilitation equipment and other incidental expenses yet. When added together, all that amount to a princely sum.

On why she is doing all these, Rafidah has this to say: “I want her to be able to live life to the fullest. I want her to know the basic activities of daily living to survive in the real world like reading, mathematics and money management.”

“If she wants to be a teacher like she aspires to be, she needs to have all these skills. These are things she can’t even learn from public schools. Therefore, I have to send her to places where she can learn, even if I have to pay for it.”

She feels that the government can do better in the provision of support system for disabled students. Apart from making public education inclusive as stated in the education blueprint, accessible school bus service should be available to make it convenient for parents who are working. Therapies should also be included in the curriculum so that students don’t have to miss classes every other day.

To sum it up, every child has a right to get an education. The onus is on the government to ensure this is realised. At the moment, parents who can afford it resort to sending their disabled children to expensive private schools because public schools are unable to provide the necessary support. The lack of trained teachers, teacher’s aides and the infrastructure are among the issues that need to be addressed.

The government should not be talking about setting an employment quota of 1 per cent for disabled people in the civil service when we cannot even provide the basic foundation for disabled children to get a decent education. What kind of jobs can one get in the public sector without relevant academic qualifications?