my autism note - #1

source: here

Empowering the disabled

Parents, advocates and caregivers across the nation are of one heart and mind that more can be done for the learning disabled community. Here is their wish list.

Teh Beng Choon, chairman, National Autism Society of Malaysia

We, as parents and advocates, need to continue to speak up for the learning disabled, particularly in the area of education. The education system has to better serve children with special needs and those with disabilities.

While some of these students have done very well in school, their achievements have been largely attributed to the commitment of their parents and supportive carers. I wonder how large a role the special education facilities play in their achievements as my own observation tells me that many children with special needs or disabilities drop out before even completing primary school.

The ministry should immediately implement Individual Education Programmes (IEPs) for every special child in school, and review the IEPs every quarter. Remedial facilities should also be implemented so that no child is left behind.

Many children with learning disabilities struggle with the mastery of language. To demand that they be educated in a language that is not one that they have mastered is to deny them the education and recognition that they need.

Our education system does not leave room for parents to choose the kind of education they want for their children. While we recognise the need for the nation to guide the development of its citizens and prepare the youths to meet and participate in national development plans, the strategies employed must not stifle development outside these goals nor deny the development of individuals who cannot fit into the greater plan.

There needs to be a liberalisation of our education system so that students can pursue fields of study where they can excel in and contribute, in the language of their choice and in an environment of their choice, be it in a public school or in a communal or home setting.

The cost of bringing up a special needs child or Orang Kurang Upaya(OKU) as defined by the Social Welfare Department, is much more than that of bringing up an able-bodied child. To help OKU to reach their full potential, the Government should consider implementing a Corporate Social Responsibility policy to make education free for all OKU up to the tertiary level in both public and private institutions of higher learning. These institutions must set aside 1% of their intake for OKUs and fund their education. All institutions of higher learning are encouraged to set up offices to support disabled and special needs students as provided for under the 10th Malaysia Plan.

A wish for 2012: PWD advocates like Teh Beng Choon, Chng Cheng Hui and Khor Ai-Na hope that remedial facilities will be implemented so that no special needs child is left behind.

Research has shown that people with learning disabilities fare better in an inclusive environment. In line with this, the Education Ministry should ensure that a least one school in every district must have inclusion programmes for disabled children.

Families are naturally protective of their special needs children. As such, most will not send their children to the special schools set up by the Government although full board and lodging is available. Commuting to these schools is a struggle for both the OKU and their carers. The Government must study the needs in every district and provide the necessary facilities in every district to cater for those OKUs who cannot attend regular school.

Non-governmental organisations (NGOs) provide an invaluable service to OKU throughout the country, filling in gaps in social service delivery and advocating for the rights and interests of the communities they serve. They also provide feedback to the authorities for planning and policy-making, and bring together Corporate Malaysia, the rakyat and the Government to improve the status of OKU in the country.

However, most NGOs are hard pressed for funds and often operate from ill-maintained rented premises. To assist NGOs, state governments must commit to build and maintain a community centre in every district to house deserving NGOs to deliver services to the OKU community.

Autism is a life-long disability that has no cure. The incidence of autism is reported to be on the rise in most countries. The latest research finding shows that autism affects 1 in every 38 children. Yet in Malaysia, autism is not treated as an urgent issue that warrants government attention.

I know of many well qualified professional parents who quit their jobs to look after their autistic children. The cost of autism is very high for the individual, the affected families and the nation as a whole. We have requested for funding from the Government for an epidemiological study to be done in Malaysia, as well as funding for research projects for the early detection of autism. I hope this wish will be granted in 2012.

Chng Cheng Hui, executive secretary, Society of Families of Persons with Learning Disabilities

There should be on-site health checks for persons with disabilities (PWDs) who have difficulty going to hospitals. A mobile medical team should be set up to provide this service. There should also be “Equipment Loan Centres” to assist PWDs own equipment that can help enhance their quality of life.

The Government’s allowance for gainfully employed PWDs should be made accessible through ATMs. Presently, they are required to go to the nearest Bank Simpanan Nasional branch to withdraw the money personally. If they miss the deadline, they will have to go to the Social Welfare Department in KL to explain their case to get their allowance.

PWDs should be granted free access to public amenities (such as transportation) and recreational premises.

For parents of PWDs, the Government should provide financial and skills training assistance to encourage them to start rehabilitation services for their children.

The Government should consider giving a monthly allowance (of RM500) to families taking care of PWDs as well as provide free health care to parents of PWDs.

Government agencies should set aside a small budget for sourcing required items from NGOs. There are plenty of items produced by NGOs that government agencies could buy. Some examples are handicrafts for door gifts, soap, and cakes and cookies.

The Government should also grant tax exemption status to NGOs serving PWDs..

Khor Ai-Na, chief operating officer, Asia Community Service, Penang

We hope that our learning disabled children will have a smooth transition when they start formal schooling after graduating from early intervention programmes. We hope for school heads and teachers to be more compassionate and considerate, and give our children a chance in mainstream schools instead of pushing them straight to classes with special education programmes (as these classes segregate them from the rest of the students in school).

We also hope that families do not have to beg for services or schools of their choice, and that the teacher assistant programme will be extended outside the Klang Valley.

Tan Pek Yimm, committee member, Autism Support Association for Parents, Ipoh

The association set up a school to meet the needs of autistic children three years ago. Although we have many parents who are interested in enrolling their children in our school, we are unable to meet the demands as we are a small set-up. We have 10 students and our biggest challenge is to recruit teachers and teacher aides. We hope to attract more teachers; at present there are only three of us. Of course, more funds will help considerably.

This year, we are expanding beyond academics. We are looking at enhancing living skills. As such, we are introducing baking and wood crafting classes.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of persons with learning difficulties. Feedback on the column can be sent toonevoice4ld@gmail.com. For enquiries of services and support groups, please call Dignity & Services ( 03-7725 5569).

What will the future hold?

Roselind Wee and Charles Siaw, Kuching Autistic Association

We hope for more support from the Government and the public. Social services should be more extensive. We hear of the services available from our friends who have migrated overseas and we yearn for these services – such as the provision of speech therapists, psychologists and teacher aides for the learning disabled – to be made available here, too.

Transportation needs to be provided for the disabled as they are not able to take public transport or the school bus. My husband and I have to fork out RM400 on transport alone for our autistic child and that is a huge chunk of our salary.

There is a need for respite care for parents whose children are severely disabled. This is to enable them to take a break so that they can recharge themselves to carry on the burden of caring for their family members who are not able to care for themselves.

Presently the range of services provided by the Government is limited. Parents have to pay for such services from their own pockets. These include expenses for special diets, vitamin supplements, speech therapy and other types of therapy. Presently parents can only claim a sum of RM5,000 as tax relief which is hardly sufficient. The amount of tax relief should be increased to RM20,000 per annum.

When we are gone, what will the future hold for our disabled child? This is an issue that haunts us. Even if we leave him money, he does not know what to do with it. We worry that he will be cheated and dumped somewhere. Will he roam the streets feeding on leftover food? Every time we pass by a man sleeping on the street, we wonder whether that will be the fate of our child when we depart from this earth. This is the deepest heartache of any parent. Unless you are in a similar position, you can’t imagine the pain and suffering we go through.

How can we as parents leave them in this world knowing that they cannot fend for themselves? Therefore, our wish is that the Government will spend more on providing care for autistic people, particularly the severely handicapped ones.