The importance of registering a disabled child


WHEN you see a little girl walking with an awkward gait, what goes through your mind? Do you focus on her impaired mobility and the many things that she cannot do? Or do you consider that she could be capable of becoming a successful person in the future?

The United Nations Children’s Fund (Unicef) ‘The State of the World’s Children 2013’ report, which was launched earlier this week, indicated that given opportunities, disabled children can lead fulfilling lives and contribute meaningfully to their communities.

I was privileged to be invited to the launching and the round table meeting of stakeholders that followed. The meeting brought together government and non-governmental parties to discuss and exchange information on issues relating to disabled children and to identify what Unicef can do in supporting on-going policies and related initiatives in Malaysia.

Disabled children have the same rights as all children, including the right to the same opportunities and support to achieve their full potential. These rights are provided for in Article 23 of the Convention on the Rights of the Child. Malaysia ratified this convention with reservations in 1995. Additionally, the rights of a disabled child in Malaysia are protected under the Child Act 2001 and the Persons with Disabilities Act 2008.

Unicef conducted a mapping of policies, programmes, interventions and stakeholders for disabled children in Malaysia last year to better understand the situation. It identified problems and provided recommendations to ensure that those rights are protected.

The result of this exercise was presented at the round table meeting. One of the issues identified in the mapping was that there is no standard and comprehensive data collection mechanism by and between government agencies. There is also the possibility of a gross underestimation of the total population of disabled persons in the current registry. This lack of reliable data is hampering efforts to formulate policies and develop effective programmes targeted at disabled children.

Registration of disabled persons, including children, with the Department of Welfare is not compulsory. The number of disabled persons registered with the Department of Welfare stood at 445,006 as of December 2012. This figure makes up only 1.5 per cent of the population of Malaysia, far lower than estimates of between 10 and 15 per cent of the total global population of disabled persons.

Some participants shared that parents were reluctant to register their disabled child for the fear of being stigmatised once they held the Kad OKU (card for person with disabilities). This matter of registration should not be viewed negatively. It should be regarded as the collective voices of individuals who identify themselves as a member of a minority community whose rights still need to be protected.

Moreover, holders of the Kad OKU are accorded a number of privileges such as free medical treatment at government hospitals, student allowance, funding for assistive equipment and tax deduction for parents with disabled children.

“The problem with stigmatising arises from society itself. That shouldn’t be the reason for not registering the child,” said Universiti Kebangsaan Malaysia senior lecturer Dr Sazlina Kamaralzaman in a discussion with me after the event.

“We should work towards changing society’s views on children with disabilities,” she added. “The government needs the statistics to make changes to the policy. Without the data, the government will not be aware of the requirements.”

She shared that the government had requested for statistics of children with autism as supporting data for the establishment of the Permata Kurnia centre, which neither the Ministry of Health nor Department of Social Welfare could provide. In the end, they had to use findings from foreign sources as justification.

The Permata Kurnia centre provides a comprehensive early intervention programme for children with autism and their families. The building located in Kuala Lumpur is expected to be ready by early-2015.

One of the situations that Dr Sazlina often encountered when travelling around to promote equipment for children with cerebral palsy is the question of demand.

“People will ask how many children with cerebral palsy out there need such equipment. I can’t provide them with the numbers because none is available,” she lamented.

During the group discussions at the round table, it was suggested that a monetary incentive be given for each successful registration to encourage more parents to register their children. This incentive should also apply to disabled adults.

In my opinion, irrespective of whether there is a monetary incentive or not, all disabled persons and parents of disabled children should make an effort to register with the Welfare Department. We need a truer figure reflected in the registry.

I believe that we number in the millions. A larger number in the statistics will certainly move the government into allocating more money and resources to provide support and facilities for disabled persons. This is especially vital seeing that many eligible disabled children still miss out on education due to the lack of accessible schools and qualified teaching manpower.

The report and the mapping results have shown that much still needs to be done and what should be done. I have great hope that this trilateral cooperation between Unicef, the government and non-governmental organisations will work out in providing a better quality of life for disabled children as it will in turn translate to a more inclusive environment that will benefit the disabled community as a whole.

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