National issue: Many parents simply don’t know what to look for when it comes to NDDs.
Families across Malaysia continue to face significant challenges in securing proper interventions for children with neurodevelopmental disabilities (NDDs), such as autism, attention deficit hyperactivity disorder and Down syndrome.
Despite growing awareness of these conditions, barriers to access remain particularly steep for those in rural areas or families with limited financial means.
A recent study highlighted the multifaceted difficulties parents encounter, from a lack of awareness about early signs of NDDs to the overwhelming financial and logistical burdens they must navigate.
Dr Cheng Kai Wah (pic,below), Faculty of Business and Communication programme head and lecturer at INTI International University, emphasised the critical role early intervention plays in improving long-term outcomes for children with NDDs.
“Many parents in Malaysia simply don’t know what to look for when it comes to NDDs.
“This lack of awareness often leads to delayed intervention, which is crucial during a child’s formative years.
“By the time parents seek help, the condition has already had a significant impact on their child’s ability to function, making it too late to benefit from the available intervention strategies fully,” Cheng said in a press release dated Sept 12.
Further complicating the situation is the severe shortage of public health services equipped to handle children with NDDs. While private therapy services are available, the high costs make them unattainable for many families.
Cheng’s research found that therapy sessions can cost as much as RM950 each – an unsustainable expense for most. This issue is even more pronounced in rural areas, where public services are scarce or far from families’ homes.
Beyond the financial strain, parents struggle to find adequate support for their children. Many Malaysian schools lack the resources and training needed to accommodate students with NDDs, leaving parents to search for specialised programmes that are either unavailable or too costly.
Reports reveal that national schools often fail to recognise the specific needs of these children, leading to inappropriate disciplinary measures or, in some cases, exclusion from the classroom, he said.
“We hear countless stories of children being left behind in their education, not because they can’t learn, but because the school system doesn’t know how to support them.
“Teachers often lack specialised training, which means children with NDDs are treated the same as their neurotypical peers.
“This approach doesn’t work and only adds to the emotional burden on parents who already feel isolated,” he added.
The increasing strain on Malaysia’s public health system only adds to the problem. A growing population and an ageing workforce have left the system ill-equipped to meet the needs of children with NDDs.
This results in delayed diagnoses and disrupts early interventions, with some families reporting wait times of over a year to see a specialist. The economic impact of the Covid-19 pandemic has further exacerbated these issues.
Many parents, facing reduced incomes or job losses, are forced to choose between their child’s health and their family’s financial stability. For most, the latter takes precedence, making it even more challenging to afford ongoing therapies.
Despite some government efforts, such as introducing the Persons with Disabilities (PWD) card to help families access public healthcare and educational services, more must be done.
Cheng advocates for expanding services in rural areas and lowering the cost of interventions.
“Policies must evolve to meet the growing needs of families dealing with NDDs,” he said.
Cultural stigma also plays a role in delaying intervention. In some communities, families fear judgement or misunderstanding, which prevents them from seeking help.
This cultural barrier, coupled with the lack of understanding of NDDs in society, leaves many parents feeling isolated in their efforts to care for their children.
Cheng’s research also highlighted the absence of comprehensive data on NDD prevalence in Malaysia, which makes it difficult to allocate resources effectively. Developing targeted solutions for families and children in need is challenging without accurate data.
While NGOs and community groups have made strides in advocating for more inclusive education policies and expanded healthcare services, these efforts need the backing of concrete policy changes at the national level. Public discussions around NDDs are becoming more common, thanks to awareness campaigns, but more action is needed.
Looking ahead, Cheng and his team remain hopeful that the government will respond to the urgent needs of families dealing with NDDs. Although there has been progress, much work remains.
“This is a national issue, and it requires a national response,” he said, adding that improving the support system for families and children with NDDs will require coordinated efforts across healthcare, education and social services.
