The unseen weight on special needs parents and why it matters

ON a typical weekday in Malaysia, many parents of children with special needs find themselves juggling therapy schedules, financial worries, and the needs of the entire household. I have seen this reality every day in my work at Taarana School.

A diagnosis may feel like a turning point, but it is only the beginning. The clinic may recommend a therapy plan or a school placement, yet the harder work begins once families leave the doctor’s office. Work hours are cut, savings redirected, and social life shrinks. The emotional weight never really lifts.

A family’s world gets rearranged in ways few outsiders see, which is why systemic support matters.

It is against this backdrop that Malaysia has made significant strides. The announcement in July 2025 of autism education centres in every state, alongside the expansion of early intervention programmes in Budget 2025, reflects a real commitment to inclusion.

These investments are urgently needed, with more than 171,000 children now registered with learning difficulties nationwide. However, the policy still focuses too much on classrooms and facilities. Far less attention is given to the people who make inclusion possible at home: parents and caregivers.

The unseen strain beyond the school gate

Parenting a child with special needs is not simply about securing a place in the right classroom. It is about keeping the whole family afloat. Families spend thousands of ringgit monthly on therapy, dietary needs, transport, and assistive devices.

Even with the RM15mil in fee assistance for autistic children, many families remain stretched thin. Parents, most often mothers, are forced to reduce work hours or leave the workforce entirely, sacrificing income and long-term security.

The demands create what I call “time poverty”. Families live around therapy timetables and medical appointments, leaving little or no room for rest.

Without respite care or supportive networks, burnout becomes a constant threat. The pressures are even greater for households in rural or low-income areas, where specialists and inclusive schools are harder to find. Without systemic support, caregiver exhaustion risks undermining the benefits of the reforms we are so proud of.

Caregiver wellbeing as national infrastructure

This is why I believe caregiver wellbeing must be treated as infrastructure. We can build new centres, but progress will stall if parents are running on empty.

At Taarana School, we try to meet this reality head-on. Our Parent Empowerment Programme trains families in behavioural strategies that can be applied at home, ensuring therapy is not confined to classroom hours.

On-site workshops support caregivers’ mental health, while NGO partnerships connect families to wider community networks. These initiatives have consistently improved both child outcomes and family resilience.

The United States, for example, has shown what is possible: where caregiver relief, workplace flexibility, and respite services are in place, children achieve better outcomes.

Malaysia can do the same. This means extending subsidies beyond the child to include caregiver training and counselling. It means embedding flexibility into employment laws so parents are not forced to leave the workforce. It also means encouraging the private sector to play its part, through tax incentives for inclusive hiring and sponsorship of community programmes.

Treating caregiver capacity as a public investment allows us to move from a narrow, child-centric approach to one that strengthens the entire family ecosystem.

From token inclusion to whole-family empowerment

A diagnosis should not feel like a cliff that parents fall off. It should be the start of a coordinated, whole-family journey.

That journey requires integrated care pathways linking diagnosis points to therapy schedules, financial aid, and peer support. It also demands stronger community networks. Research shows that both low- and high-intensity caregivers in Malaysia report significant negative impacts on their health and daily lives when left unsupported.

At Taarana, our parents are part of a support group that helps families share experiences and guide one another. We run sessions on communication, advocacy, and self-care because building family resilience is as important as building academic progress.

Parents in similar programmes elsewhere have spoken about how powerful this kind of support can be, with one describing it as giving her “permission to breathe” after years of non-stop care.

We also need a cultural shift. Too often, disability is framed in terms of pity. Instead, we must recognise caregivers as skilled partners in national development.

This mirrors the calls of advocates who ask, “What will happen to my disabled child when I am gone?” That question is not just an emotional one, but a policy challenge. It demands long-term planning and systemic inclusion of families in the design of our national disability agenda. 

Malaysia’s special needs children’s agenda cannot succeed if the weight carried by caregivers remains invisible. We can build the best autism centres and inclusive classrooms, but without systemic empathy and structural support for the family unit, progress will stall at the school gate.

By lifting the financial, emotional, and social weights on caregivers, Malaysia can unlock its children’s full potential, not as a charity act, but as a smart, sustainable policy.

Because when caregivers thrive, children thrive, and the nation moves closer to the inclusive future it aspires to have.

DR SUNITHA SIVAKUMARAN

Principal

Taarana School

Taarana is a school dedicated to supporting children with developmental delays and special education needs. The letter writer is parent to a son diagnosed with Autism Spectrum Disorder.