THE National Early Childhood Intervention Council (NECIC) would like to highlight the plight of children with special needs who are denied access to inclusive education. We recount real-life stories of children (names changed to protect their privacy) who struggle through an education system that marginalises them on the basis of their disabilities.
Ibrahim is a delightful boy who has autism. Autism is a condition where the child has difficulties with communication and social interaction. Most children with autism have a normal IQ (Intelligence Quotient) and the potential to succeed in school.
Ibrahim is a good example. He is currently in Form One in a regular government school. Unfortunately, he is repeatedly misunderstood by teachers and peers.
They keep saying he is "inattentive" and does not focus on the teacher. Hence he receives "demerits" and is sometimes physically punished (caned). This is despite repeatedly writing to the school and explaining his situation to his teachers since primary school. They still fail to understand that he is not ignoring the teachers or being stubborn; Ibrahim has autism.
Recently, the school authorities referred him back to the Paediatric Specialist Clinic again, requesting that Ibrahim be registered as an OKU (Orang Kurang Upaya), so that he could be transferred to a special education class.
It is important to note that Ibrahim was placed 130 of 240 in the school's entire Form One examinations! Out of sheer frustration, we requested the school to send all the other children who scored lower than Ibrahim (all 110 of them) to be registered as OKU before we considered registering him.
Murali is a cheeky young man with Duchenne Muscular Dystrophy (DMD). DMD is a muscle wasting condition, affecting boys, which usually presents itself around 5 to 7 years of age, with progressive muscle weakness.
Most sufferers will need to use a wheelchair by 12 and their lifespan is 18 to 25 years. Despite knowing what his future holds, Murali's parents have worked hard to ensure a reasonably good quality of life for him and that his needs are met both at home and in the school. This has meant carrying him into the class, buying the aids he requires, taking him to the toilet at school, etc.
Recently, Murali sat his Penilaian Menengah Rendah examination. We wrote to the Education Department requesting that he be given a little extra time as his hand muscles have, by now, been affected. Murali is no longer able to lift his arms and his ability to write has been impaired.
Despite these difficulties, Murali scored 3As and 4Bs in the examination! This is remarkable, considering the fact that the invigilator refused to grant him extra time despite his handicap.
Worse still, when Murali needed to go to the toilet assisted by his parents, the invigilator refused him and Murali wet himself while doing the examination paper.
It is hard to understand such uncaring teachers but look at the unyielding spirit of this child. Imagine what results he could have achieved if he was supported just a little. Often the rationale behind the refusal is: "We have to be fair to every child" despite the fact that a child like Murali did not have a "fair chance" to begin with.
Amanda is a 5-year-old girl with Down's syndrome. As soon as Down's syndrome is mentioned, many people, including teachers, have doubts about future educational prospects.
But there are many exceptions, and Amanda is one. Despite being born with Down's syndrome, Amanda is functionally better than many children her age. She can read and write in two languages and outperforms her kindergarten classmates academically.
You may wonder how this happened. Well, Amanda has teachers who allow her mother to sit in and support her learning. The problem is how will this work out when it's time to move on to primary school? Amanda does not belong in a special education class; she is well able to cope with the regular classroom curriculum provided she is given the appropriate support.
What Amanda needs is a system that will take into account her learning needs, supporting her, and including her in every sense of the word, i.e. an inclusive system. This may mean being in a class with a low student-teacher ratio which is able to provide better personal attention to individual students.
It would be ideal to have the support of a teacher aide, or else allow Amanda's mother to be in the classroom. The reality is that few schools offer such support and most are not keen to have a parent/teacher aide in the class.
Educating children with special needs in segregated settings contradicts the Persons with Disabilities Act 2008, which stipulates that these children shall not be excluded from the general education system on the basis of disabilities.
The recent Malaysia Education Blueprint reiterates an inclusive education policy for children with special needs. Regrettably, however, implementation of such an inclusive policy creeps along at a negligible pace.
As our stories illustrate, just a little support would have gone a long way in helping these children realise their true potential.
Ibrahim, Amanda and Murali are not alone. There are many children with similar special needs. Helping or pitying one or two of these children with intermittent financial gifts won't help much. We need a system that involves all who surround special needs children to be supportive, to make the school environment more supportive.
But we want to close on a more positive note -- the success story of another child, Sarah -- that illustrates how easily a supportive school environment can be created.
Sarah is currently in Year Six in a regular primary school (normal class). Sarah has a normal IQ, is reasonably functional and has autism. However, she does have social impairment and does not fully appreciate all the social situations she is faced with.
So what made the difference? Sarah's headmaster is a gem. As soon as he became aware of Sarah's condition, the headmaster rallied support around her. Teachers and classmates were made aware of her needs, helping her with the daily routine of school life, like helping her to copy down her assignments correctly, helping her to articulate her needs, etc. Not surprisingly, Sarah is doing well academically and, what is more important, she has found a home in this school.
There are teachers and headmasters like Sarah's in our education system but they are always not supported well by their peers. We need countless more such individuals to cope with the many children that should be in the system.
None of us can make it alone. We all need support. But when even the minimal basic support cannot be offered to children with special needs, it means we have failed to include them. We have failed those who most deserve our support.
It is not the child with special needs who needs to change; rather it is the system and the teachers who surround the child who need to change.
We cannot emphasise enough: include the child with special needs in the regular classroom. This inclusiveness is not just physical but also educational.
The teacher aide training programme to support a child with special needs in normal class is long overdue. We must progress towards the inclusion of all children, with different abilities and needs, into our education system so that they will be accepted fully as part of our society.
Datuk Dr Amar-Singh (president and consultant community paediatrician), Dr Wong Woan Yiing (secretary and consultant paediatrician), Dr Toh Teck Hock (member and consultant paediatrician, National Early Childhood Intervention Council
New Straits Times Letter to the Editor 31 May 2013