YAP SOOK YEE, 42, and Edmund Lim, 43, discovered that their son Branden Lim has spinal muscular atrophy, a genetic disorder, when he was 13 months old.
The rare genetic neuromuscular disease affects the nerves which control respiration and movement. Branden, 6, cannot sit or stand without support and undergoes a wide range of therapies and paediatric medical care.
His medical condition requires a nasogastric tube which goes into his left nostril. Two support cushions, tucked in snugly on either side, help him to sit upright.
His elder brother Jaden is a healthy child, but Sook Yee and Edmund worry about whether Branden can go to school and the other children’s acceptance, or otherwise, of him.
Sook Yee said: “Inclusive education is one way to bridge the gap between normal children and those with disabilities but it’s a challenge if a child such as Branden needs constant care.
“Facilities such as classrooms and equipment should be easily accessible to special needs pupils.”
Sook Yee, who is vice-president of the Malaysian Rare Disorders Society, said: “There is still a stigma attached to having a rare disorder and parents do feel embarrassed. We want to share that it is possible to live like a normal family.
“Life does not have to come to a grinding halt because a child has a disorder or disability.
“Learn to create experiences by not focusing on the disability but the ability instead.”
Both Sook Yee and Edmund also founded weCAREjourney, a one-stop portal to improve access between the disabled community and providers of care and support.
The national education system has provisions for students with special needs. The Education Act 1996 and the Education (Special Education) Regulations 2013 cover education for children with disabilities in the country. Section 40 of the Education Act requires the Education Minister to provide special education in special schools or designated primary and secondary schools.
The Education Ministry, through its Special Education Division, aims to provide education opportunity and facilities for students with special educational needs; help develop their talent; provide up-to-date teaching and learning material; and ensure sufficient trained teachers in special education.
Special Education Division director Shazali Ahmad said pupils with special educational needs must be certified by a medical practitioner as having a disability or any combination of disabilities and/or difficulties in order to attend special education programmes in public schools or government-aided schools.
Shazali added that education opportunities for children with disabilities are the same as those in the mainstream.
“The period of education can’t be less than the minimum duration of primary and secondary education as provided for in the Education (Special Education) Regulations 2013.
“An extension is a privilege for children with disabilities and is not compulsory. However, potential students are encouraged to follow the period of learning similar to those in the mainstream,” he added.
Children with special needs aged four to five are also given the opportunity to attend preschool. Admission to preschool is under the management of the National Registration Department or District Education Office.
For primary education, there are 33 SK Pendidikan Khas while secondary students with disabilities can be placed in various special education programmes in 31 SM Pendidikan Khas or SM Pendidikan Khas Vokasional.
In addition, these students have the opportunity to attend mainstream schools via the Special Education Integrated Programme and Inclusive Education Programme.
The main aim of Special Integrated Education Programme is to ensure that students with special needs can learn in a least restrictive environment. This enables the students to learn in a normal learning environment and enhance social integration between children with special needs and their mainstream peers in as many school activities as possible. Therefore, they will also be able to develop their social and communication skills effectively.
All the special classes in regular schools are equipped with appropriate teaching and learning facilities to ensure that the students can learn in a conducive learning environment equitable to their peers in the mainstream school.
Students in the Inclusive Education Programmme are placed in the same educational setting as other schoolchildren.
The programme is available at government schools and government-aided schools at preschool, primary, secondary and post-secondary levels. High-functional students with special educational needs learn together in the same classrooms with other students.
Outlined in the Malaysian Education Blueprint 2013-2025, the Inclusive Education Programme supports the national aspiration to increase access of education to all groups, including those with disabilities.
To ensure the outcomes of children with disabilities, the special education teacher will provide the Individual Education Plan for each student. It is a written record which states a comprehensive individual education plan based on the capabilities, strengths and needs of the student.
The plan covers the academic and non-academic; a series of activities designed to help the student; and the necessary support services.
“Teachers need to understand the individual needs of students by making observations and discussions with the parents in the planning and decision-making, and adaptation of teaching and learning methods,” added Shazali.
SMK Jelapang Jaya, Ipoh special education teacher Shyielathy Arumugam said she has observed that the number of autistic children is increasing.
“The Education Blueprint 2013-2025 has incorporated inclusive education. There are also campaigns and awareness programmes but we, especially special education teachers, have to educate the community to accept children with disabilities,” said Shyielathy.
“Society may offer sympathy but special needs students need empathy.
“The government must take more measures to create awareness among the public. We also need to empower teachers.”
INTEGRATED PLAY GROUP
THE increase in the number of children with Autism Spectrum Disorder and the range of abilities among them highlight concerns on how to provide an appropriate public education in the least restrictive environment to children on the spectrum.
Inclusive education means that every child has the right to learn in a mainstream classroom. It concentrates on implementing best practices for children with special needs within the regular classroom.
Under the United States Special Education Legislation’s Education for All Handicapped Children Act (1975), the US government provides free and appropriate education, educated alongside typical peers to maximum extent possible within the “least restrictive environment”, individualised education family support plan developed by an interdisciplinary team of parents and professional, and due process under the law to assure protection of rights.
In the 1980s, the continuum of inclusive practices in mainstream included special day class (some integration for free play/unstructured activities); resource — partial integration (select academic periods and free play/unstructured activities); and full inclusion in general education.
These were some of the discussion topics at the Permata International Conference 2016 held at Putra World Trade Centre from May 31 till June 2.
In her presentation titled Preparing Children with Autism for Inclusive Education, Professor Dr Pamela Wolfberg from San Francisco State University in the US discussed various models of inclusive education for children with autism around the world.
She said children with autism are vulnerable to peer neglect, rejection and bullying.
She introduced the Integrated Play Group (IPG) model in the late 1980s which is designed to promote socialisation, communication, play and imagination in children with autism while building relationships with typical peers and siblings through mutually engaging experiences in natural settings.
“The promising outcomes of IPG pilot programmes resulted in mutual benefits such as reciprocal friendships and fun playing together with typical peers.
“I hope to create greater awareness and understanding of the development of young individuals and their optimal growth, and address the unique educational and social needs of children across the autism spectrum within inclusive settings.
“I feel that people who come up to me are really responsive. People want more. They want more information and they want more ideas. They also probably want action,” she said.
An IPG brings together children with autism (novice players) and competent peer partners (expert players) who are led by a qualified adult facilitator (IPG Guide).
Each IPG is individualised as a part of a child’s education/therapy programme. Using sensitive assessments, IPG sessions are tailored to children’s unique interests, abilities and needs within a specially designed play environment.
Extensions of the IPG model include such innovations as drama, art, video, movement and other creative activities of high interest for a variety of age groups.
The IPG model has been widely adopted by schools and community-based organisations at the local, national and international levels.
A professor in the Department of Special Education and Communicative Disorders, Wolfberg coordinates the Autism Spectrum Graduate Certificate (university-wide) and advises the Mild-Moderate programme (within the department).
She concurrently serves as faculty adviser for the Joint Doctoral programme in Special Education with the University of California, Berkeley-SFSU.
“How do we prepare children with autism? I believe in individualised support and services that will enable them to catch up to and fit in with their typical peers so that they may independently access the general education curriculum and participate in social opportunities.
“And how do we prepare our schools and community? We need knowledge, understanding and competence to provide appropriate support and services for children with autism to meet their potential while participating with their typical peers in meaningful learning and social experiences,” added Wolfberg.
As originator of IPG model and founder of the Autism Institute on Peer Socialisation and Play, she leads research, training and development efforts to establish inclusive peer socialisation programmes worldwide.
She is further engaged in global outreach as a human rights advocate for the child’s right to social inclusion in play, recreation and cultural experiences.
Her work can be viewed at wolfberg.com/