EACH year we celebrate a number of disability days, often with the involvement of the Women, Family and Community Development Ministry, Health Ministry and Education  (Ministry (MOE). Recently, we observed World Autism Awareness Day on April 2. On March 21, we celebrated World Down Syndrome Day There are also International Day of Persons with Disabilities (December 3), World Cerebral Palsy Day (October 6), Invisible Disabilities Week (October 17–23) and many others.

Ministers usually make speeches during these events that are published on their social media pages.

These days and events are critical to focusing the nation’s attention on the lived experiences of persons with disabilities.

At the same time, we need to ask: what impact have they made on the rights and support services of the disabled? Have they galvanised the government agencies into enlarging and improving services for persons with disabilities?

For taxpayers, independent and regular audits of the government entities are long overdue. Malaysians have a right to the results of independent assessments of the scope and effectiveness of government services, performance and annual and longer-term plans for persons with disabilities. Persons with disabilities and their care partners account for more than 30% of the population. With the rapid ageing of Malaysian society and ageing-disability intersectionality, we must acknowledge that the numbers will further rise. Yet, the disability community is one of the most poorly served in the nation.

Here are critical questions that the three ministries need to answer on plans that each has outlined for the disabled community:

1. What has happened to the National Autism Council which formation the Health Ministry announced in July 2022? Does it take two years for its inception? Services for autistic persons are limited, with most services provided outside of government agencies. Autistic persons, and other persons with disabilities, face barriers throughout their life course, from inadequate access to timely diagnosis and support services to the absence of systematic, long-term efforts to reduce stigmatisation and discrimination, especially for OKU card holders, thus discouraging many from being formally registered as OKU.

2. Could the Public Services Commission and the chief secretary to the government explain why we have failed, after 35 years, to meet a government policy target and promise of 1% civil service jobs for disabled persons? The current rate is 0.3%. Most telling is that the majority of persons with disabilities who attempt to apply for a job via the commission do not even get called for an interview. Discriminatory practices against OKU who have the necessary qualifications extend beyond recruitment to job security and career advancement for the very few OKU in the civil service. Why are such practices silently condoned and perpetuated? Why is there no leadership in ending the injustice of discrimination against qualified OKU in the civil service? 

3. The Women, Family and Community Development Ministry has a plan for the disabled, called the “Pelan Tindakan OKU 2016-2022.” Could it inform Malaysians what it has achieved for the 10 plan strategies, as well as its many objectives and targets? After 2022, why has there been no follow-up Pelan Tindakan OKU? Without a Pelan Tindakan OKU since January 1, 2023, how does the ministry allocate resources for OKU?

4. The Women, Family and Community Development Ministry announced that amendments to the Persons with Disabilities Act 2008 would be tabled in parliament in June 2023. Nine months later, we are still waiting for meaningful amendments to harmonise the act with the Convention on the Rights of Persons with Disabilities (CRPD) that Malaysia ratified in 2010. Noteworthy is the 10th core strategy (under  Pelan Tindakan OKU 2016-2022) to “implement laws in accordance with the Convention on the Rights of Persons with Disabilities.” Could the ministry explain what it has done to include and reflect the CRPD in amendments to the act?

5.  The family health development division if the Health Ministry has a detailed “Health Care for Persons with Disabilities Plan of Action 2011-2020.” It would be good to know what has been achieved. In the case of MOH, why has the plan for the disability community stopped, in this case, in 2020, without a follow-up plan? Is it customary for a plan or its follow-up to take years to be launched?

6. In the case of the development of the National Dementia Plan of Action, which custodian is MOH, the process commenced in 2019, with civil society inputs in 2022 for the revival of the draft plan and again in March, with no indication when it will be launched.  

7. The Education Ministry has a meaningful “Malaysian Education Blueprint 2013-2025” (MEB)m which outlines that “75% of students with special needs should be enrolled in inclusive programmes by 2025”. The ministry recently announced that the blueprint has “achieved success.” And yet, those of us who work with children with disabilities know how limited inclusion into mainstream education still is. It is time to take stock of the real achievements on inclusive education by listening to the ground realities of the disability community.

8. Why are the reports of the work undertaken by the National Council for Persons with Disabilities and its subcommittees not made available on the Women, Family and Community Development Ministry website for easy access to the OKU and the entire disability community?

Disability days are good for to raise awareness, their original purpose, but only if they are reinforced by comprehensive efforts that yield meaningful change in the lives of persons with disabilities at the household and community levels. Nice speeches, plans and ideas are of no value unless translated into reality. The disability community is languishing. Children with disabilities are not fulfilling their potential. Adults with disabilities are struggling for equitable inclusion in all aspects of mainstream society. Malaysia is ill-prepared for disability with rapid ageing. This is a system-wide failure that calls for an urgent reality check and corrective actions. The answers to the above questions are a telling measure of the state of societal wellbeing. – April 2, 2024.

* Letter from Dr Amar-Singh HSS, San Yuenwah, Anit Kaur Randhawa, Ng Lai-Thin and The OKU Rights Matter Project.

* This is the opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insight. Article may be edited for brevity and clarity.