Disability support must go beyond autism, say experts

 

MALAYSIA should stop relying on Social Welfare Department (JKM) registration figures when planning disability services, as hundreds of thousands of children with disabilities remain unregistered and underserved, according to the National Early Childhood Intervention Council (NECIC) and The OKU Rights Matter Project.

The call comes after Deputy Women, Family and Community Development Minister Lim Hui Ying told Parliament that 93,000 of the 850,000 persons with disabilities registered with JKM as of June are autistic, prompting calls to expand autism-related services.

However, the groups said the focus should extend beyond autism to encompass all childhood disabilities.

In a joint statement issued by Datuk Dr Amar-Singh HSS, Wong Hui Min, Ng Lai Thin, San Yuenwah and Anit Kaur Randhawa on behalf of NECIC and The OKU Rights Matter Project, they noted that while JKM records show 230,775 registered children with disabilities as of June 2026, the figure represents only a fraction of the actual number.

Citing UNICEF’s 2025 estimate that between 12% and 13% of children live with some form of disability, and Department of Statistics Malaysia population data showing 9.03 million children below the age of 18, the groups estimated that more than 850,000 children with disabilities remain outside the registration system.

“This means the majority of children with disabilities are neither recognised nor adequately supported,” they said in a joint statement.

They added that voluntary registration figures should not be used as the primary basis for government planning or budget allocations, as many families choose not to register their children because of concerns over discrimination in education, insurance and future employment.

The statement also highlighted the under-representation of girls in disability registrations, with female registrations occurring at roughly half the rate of boys.

According to the groups, limited access to assessment and intervention remains a major challenge.

Children often wait more than six months to see paediatricians, developmental specialists or allied health professionals such as speech and language therapists, occupational therapists, physiotherapists and child psychologists.

Even after diagnosis, therapy sessions are often infrequent because of workforce shortages.

The groups also said medical training should place greater emphasis on childhood disability, arguing that many healthcare professionals receive limited exposure to disability assessment and rehabilitation during their undergraduate and postgraduate training.

(Image: Unsplash/Tanaphong Toochinda)

They stressed that early childhood intervention is critical, particularly during the first two to three years of a child’s life, when developmental outcomes can be most significantly influenced.

Although many non-profit organisations provide early intervention services, demand continues to outstrip supply, with long waiting lists and limited access for low-income families, particularly those in rural areas, Sabah and indigenous communities.

The groups urged the government to stop relying solely on JKM’s voluntary disability registration figures when planning services and allocating budgets.

Instead, they said planning should be based on internationally recognised prevalence estimates, which suggest that between 12% and 13% of children live with some form of disability.

They also stressed that policy should address the full spectrum of childhood disabilities rather than focusing predominantly on autism.

Conditions such as attention-deficit/hyperactivity disorder (ADHD), dyslexia and other specific learning disorders also affect large numbers of children and require adequate support.

The statement further called for reforms to undergraduate and postgraduate medical and allied health curricula to strengthen training in childhood disability assessment, rehabilitation and early intervention, saying healthcare professionals need better preparation to identify and support children with disabilities.

To improve access to services, the groups urged the government to expand funding for early childhood intervention (ECI) programmes and integrate successful civil society initiatives into the national support system.

They also proposed introducing a fee schedule and ceiling for private ECI providers to improve affordability for families.

Greater attention should also be given to children living in rural, indigenous and other underserved communities, they said.

This would require significant investment in Community-Based Rehabilitation (PDK) centres to ensure they can provide services comparable to those offered by established non-profit organisations.

Finally, the groups called on the Health Ministry to substantially increase the recruitment of allied health professionals, including audiologists, speech and language therapists, occupational therapists, physiotherapists and child psychologists, arguing that local universities are already producing graduates who could help address longstanding workforce shortages. ‒  Focus Malaysia