Fund raising dinner for autism kids

Dear friends,
My blog has become inactive or “cob-web” for some time due to my busy schedule, and you know I have not been feeling well for about 10 days last month.

Today, I am looking at all the old emails and old pictures which my assistant has helped me to put on my blog some time ago, and I am trying to write some old stories.

This piece is about a moving event that I have attended, i.e. the fund raising dinner organised by Parents Resource for Autism (PR4A) held on 27th April 2008. My former USM classmate Pang Hin Yue has been the one that strongly persuaded me to attend the dinner. She even wrote the speech for me to speak for that night.

Before attending the event, I knew very little about autism cases, I was made awared of them now after the dinner event, and I truly pity the parents who raised up these autism children.

The young boy is an autism child. He drew all these fine pieces that hang on the wall.


Famous model Amber Chia came to give support to the event. The man next to me is the President of the PR4A.

Group photo with the organiser of Autism society dinner. Gentleman from the left is the president of the society, the woman on my left is Ng Kit Yong (my USM classmate), Pang Hin Yue (USM coursemate) and a parent.

Look at these fine pieces, they are the works of autism children.

My friend Pang Hin Yue has cracked her head and helped me to write the following opening speech for the fund raising dinner. Below is the speech:

Dear Friends,

            Let me first congratulate the members of Parents Resource For Autism (PR4A) for all the hard work they have put in to mark United Nations’ inaugural World Autism Awareness Day. 

            The worldwide campaign that is to be commemorated yearly on April 2nd, underscores the magnitude of the problems faced by families with autism. There are 35 million people with the brain disorder that impedes communication, learning and social behaviour. That is equivalent to 12 percent of the United States’ population. The number is significant. Equally alarming is that one out of every 150 persons has autism and there are more males than females diagnosed with it.

            Based on the UN calculation, persons with disabilities account for 10% of any given population. In Malaysia, that would mean there are 2.7 million people with both physical and mental disabilities. But as of end of 2006, only 197,519 persons with disabilities had registered with the Social Welfare Department, with persons with learning disabilities accounting for nearly 39% per cent.  I believe that figure by the department is not a true reflection of the situation in Malaysia. More needs to be done by the department to encourage people to register with it. This will help strengthen the collective voice of the disabled.

            There is no argument that the exponential increase in autism and other learning disorders has to be met with equal zeal by the respective authorities in providing healthcare, education and emotional support to families affected by disabilities. Foot dragging will only push up the social and economic costs. The Government seriously has to pay more attention in increasing allocations and tax relief as well as enlarging trained resources so that there will be more skilled teachers to help special needs students meet their respective challenges. Likewise, universities must keep abreast with the interventions for persons with learning disabilities. They also need to step up efforts to attract students to pursue courses on psychology, psychiatry, speech and neurosciences to better serve the growing community of persons with disabilities.

            Equally vital is the need to address the grossly inadequate legal provisions if we are to help persons with disabilities realise their full potential. As a signatory to the UN Convention on the Rights of the Child and UN Declaration on the Rights of Disabled Persons, Malaysia must abide by them by ensuring equal opportunities to healthcare, education and employment.

        Ladies and gentleman, it is the Selangor Government’s endeavour to make the state a disabled-friendly one. Let us work together to make Selangor an inclusive, barrier-free and rights-based society.

As an elected representative in both Parliament and the Selangor State Assembly, I give you my word that I will raise up issues faced by the affected community, notably the gaps in the newly passed Disabilities Act and the Special Education regulations made under the Education Act. I will also press for greater allocations for the special needs community.

 

            In December 2007, Parliament passed the Disabilities Act to safeguard the rights of persons with disabilities. Although the Act prohibits discrimination against persons with disabilities, it has NO provision to penalise those who do. Regulations, therefore, must be introduced under the parent Act to provide legal recourse for persons with disabilities who face discrimination. Further, the 1997 Special Education regulations under the Education Act needs to be amended to end discrimination against persons with special needs  

           Section 3 of the regulations states: “For government and government-aided schools, pupils with special needs who are educable are eligible to attend special education programme…” The term “educable” is unacceptable because it suggests that only those who are deemed “educable” – which is highly subjective — are admitted to school. Every Malaysian – regardless of the degree of disability – has equal rights to education. No one should be denied of the right. This is guaranteed under the Federal Constitution.

I understand that the Bar Council in 2005 had submitted a memorandum on this very contentious issue to the Ministry of Education. Despite collecting over 28,000 signatures asking for legal reform to protect the rights of the learning disabled, the Ministry  Education has yet to amend the regulations. This goes against the spirit of the Federal Constitution and the UN Conventions on Rights.

 

Last year, the Ministry of Education released the National Education Blueprint for year 2006-2010 with much fanfare. But issues pertaining to students with disabilities remain on the periphery. Consider this: only 1.98 per cent or RM415.9 million of the total RM21,048.2 million for school development for the period 2006-2010 is devoted to meeting the needs of  persons with physical and mental disabilities. That is clearly inadequate.

Ladies and gentlemen, I salute to you parents who, despite the inadequacy of the law and support services in schools, continue to persevere to ensure your children’s needs are cared for. Many of you have to use your own resources to get the necessary interventions such as behavioural modification therapies, speech therapy and occupational therapy to ensure your children’s potentials are fully realised. But what of the families who can’t afford them?

It is time the Government review the tax structure for families impacted by disabilities. At present, tax relief of RM5,000 per annum is given. This is insufficient considering parents have to pay for therapies, which are often costly, from their own pocket. Even the monthly allowance of RM50 from the Ministry of Education is not enough. An hour of therapy can cost anything between RM50 to RM100. According to a Harvard University study , the life time cost of autism is US$3.2 million which is equivalent to RM10.1 million. That sum includes the costs of caring and the lost income opportunities for families who have to forgo careers to care their special needs children.

 

In light of this, I am encouraged and deeply moved to know that NGOs like PR4A and the National Autistic Society of Malaysia and other self-advocacy groups are actively serving families and individuals with disabilities. Keep up the good work. Your fight for rights is now my fight too. Thank you.