Autism is often invisible and undercounted, yet it defines so much of many people’s lived reality in Malaysia. — 123rf
HOW can ministries be held accountable for embedding disability-inclusive measures in their budget proposals, and are there specific tools, key performance indicators, or institutional reforms that should be mandated?
Accountability must go beyond merely reporting attendance. If ministries want state-funded programmes, then accessibility must be included across the board, says Beatrice Leong, founder of the Autism Inclusive Direct Action Group (Aida).
“Make that a policy, not an option. Public institutions must also be made accountable by amending the Persons With Disabilities Act, because right now there is no redress mechanism, and they are not held responsible.
“We also need to reframe the idea of reasonable accommodations into access needs. It is not about just trying our best – it is about guaranteeing access,” says Leong, who is autistic.
Leong emphasises that if urban development includes roads for connectivity, then accessibility for persons with disabilities must be treated with the same priority.
“The KPIs need to track whether outcomes actually change. Did disabled women get access to employment? Did transport become safer?
“I have been in consultations where ministry staff nod politely, but nothing changes once budgets are approved.
“Gender focal teams need training and real authority. There must be audits – and if universal design or inclusion standards are ignored, future allocations should be cut. Otherwise, it will just be business as usual.”
On the role of civil society and grassroots data in shaping inclusive fiscal policy – especially when official statistics fall short – Leong points to disturbing numbers: the OKU (orang kurang upaya, Malay for disabled) card recognises only around 767,000 people, while the World Health Organisation estimates that more than 4.5 million Malaysians live with disabilities.
“I know this personally, because autism is often invisible and undercounted, yet it defines so much of my lived reality. Official data is still too broad and hides the differences within our communities.
“We need to start talking about universal accessibility in a serious way. Assume that everyone will experience disability at some point in their life. Put all the measures in place now – and start measuring how many people actually use them. This is how hidden disabilities and lived realities, especially of women and girls, are made visible and used in budget planning.”
At the same time, Leong reminds policymakers that universal design (UD) – the concept of spaces usable by everyone – must go far beyond just ramps and lifts.
“For me as an autistic woman, design barriers are often sensory or cognitive. Noise and sound pollution, overwhelming waiting rooms, poor signage, flashing lights, information I cannot process. Budget 2026 should mandate UD standards across all federal projects, with a clear line item for accessibility upgrades.
“When I walk through a space that has thought about these needs, I feel less like a problem and more like I belong. I can last longer outside without feeling like I am being punished for existing in this world.”
