Early Childhood Intervention – A Basic Right for Our Children

The NECIC would like to thank Dato’ Sri Najib Tun Abdul Razak for his recent supportive remarks on children with special needs (children with disabilities). His support of our special needs children and his recognition of their potential has encouraged the hearts of many parents & NGOs. The NECIC would like to share some suggestions on the needs of these children and their parents in Malaysia.
 
Majlis Kebangsaan Intervensi Awal Kanak-Kanak or the National Early Childhood Intervention Council (NECIC) is a registered coalition of parents, therapists and professionals from a large variety of NGOs and government agencies that are and have been actively involved in the provision of early childhood intervention to children with special needs for many years. We have formed this national council to advocate for early childhood intervention as a right and to optimise the learning and development of children with special needs.
 
Our esteemed Prime Minister may not be aware that children with special needs account for between 10-15% of all children in any country. Of these 2-3% have intellectual disability, 1% Autism, 5-10% dyslexia and others a whole range of physical, learning and sensory (hearing & vision) impairments. The majority of these are congenital and not acquired by high fever, or any mistakes made by the parents Early detection and prompt diagnosis of these children is still limited and often delayed.
 
Our Prime Minister was right in pointing out that parents should equip themselves with knowledge so that they can be the long lasting resource for their children and able to seek appropriate help early to prevent further development of behavioral and mental health problems. Appropriate Early Intervention Programmes (EIP) will help to harness the potentials in these children and reduce the burden on the community in later years.
 
It is sad that currently the vast majority of these children in our country do not obtain the services they need and which are their right to receive. Many parents struggle to find the support they need from government agencies. Over the past 30 years NGOs have attempted to fill this vacuum but much more development of services is required throughout the country. The Prime Minister is right in saying that community rehabilitation centres (CBR) are available but these often cater better for children with multiple disabilities and seriously lack expertise for learning disorders, autism and dyslexia. CBRs in the country are also heavily used by school-aged children and adults, limiting their access to pre-school children. Some of us in the NECIC are actively involved in supporting CBRs and know their real status.
 
We would strongly urge the Prime Minister and relevant government agencies to work extensively in partnership with relevant NGOs to ensure the adequate provision of early intervention programmes/services throughout the country. We urgently need effective, integrated and convenient intervention services provided by well-trained, highly skilled and intensely motivated professionals. In addition, government agencies must recognise the role of families and use them as the focal point of positive partnerships as well as include them in the planning of EIP services.
 
Finally early intervention is the beginning. EIP prepares children to school, yet our education system for preschool and schooling special needs children seriously lags behind that of many countries. Those of us who have been labouring in this area for more than 20 years know the struggle children face when going to school. While encouraging the further development of EIP services we must also seriously promote inclusive education for children with special needs.
 
What we need at this time is not more planning, talking, committees or organisation. We have seen enough of that and it has brought little benefit. We need the outright dramatic increase in expenditure, manpower and services for 10-15% of all our children who are relatively neglected.
 
Registration of OKU is important to ensure accurate data for service planning. However, it may be important to point out that often parents may choose not to register their children as disabled (OKU), as the current system appears to victimise the children. Once registered even children who can go to normal class are often rejected and sent to special education. The system must be changed so that it can offer genuine support to the child and the family. We have to move away from this charitable welfare model.
 
The time has come for us to no longer marginalise these children and their parents. The time has come for us to enable the dreams these special needs children have to be part of 1Malaysia to become a reality. The time has come for us to integrate special needs children into our hearts. It is us, the able, who are handicapped by our priorities and action and we need to change. We must stop our pity of “disabled children” and offer concrete action now, not tomorrow.
 
Dato’ Dr Amar-Singh (President)
National Early Childhood Intervention Council
(Note: This statement was prepared collectively by all the NGOs represented in the NECIC)