Materia Medica Malaysiana

Helping families with disabled members

ALTHOUGH Malaysia aspires for developed status, there is still a lot that needs to be done in terms of support services given to families with disabled members.

According to Prof Steven Daley from California State University, Sacramento's Department of Special Education, Rehabilitation and School Psychology, special education and rehabilitation services are universally available to all children with disabilities and their families.

''In Canada, the United States, countries in Western Europe and Japan, there is an explicit legal mandate that serves as a foundation for special education and rehabilitation services.

''When special education services are framed by enabling legislation, the critical factor of equal access is squarely addressed in a way that insures all children with disabilities will be provided with free and appropriate public education,'' he says.

In developing nations, Prof Daley says it is important to implement federally mandated services that reflect international standards.

''Vision 2020 articulates a brilliant and persistent commitment to the development of a caring society. The next logical step for the country is to implement federal legislation that will provide full access to special education services for all of Malaysia's children with disabilities,'' he opines.

Organised by the Universiti Malaya (UM) Centre for Family Development with the support of Yayasan Budi Penyayang Malaysia and the Women, Family and Community Development Ministry, the one-day forum brought together parents, government representatives and experts in special education.

The theme of the forum, Nurturing Family Life: Effective Partnerships encapsulates the most pressing issues faced by individuals with special needs and their families.

Organising committee chairman Sandiyao Sebestian says families are the building blocks of society and strong family units build a healthy society.

''The families of persons with disabilities are very much a part of society and every effort should be made to ensure that these families feel included through effective partnerships,'' he says.

Prof Daley believes families are strong, critical partners in the development and implementation of high quality special education services.

“Families know their child the best and they have keen insight on what constitutes both the developmental goals and educational outcomes desired.

“The education of a child with special needs is a full-time job and families cannot be expected to manage this on their own,'' he says.

Teachers work with the child in school while parents have the lion's share of the responsibility for raising a child who often presents many challenges.

“Collaborative partnerships also require the provision of training and ongoing support to families so that they may better cope with the many demands of having a child who has special needs,'' he says.

Sebestian who is a UM lecturer, says when the United Nations extended its Asian and Pacific decade of the disabled, the 'Biwako-Millennium Framework' was formulated.

The main thrust of this regional framework is to work towards an inclusive, barrier-free and rights-based society for persons with disabilities.

Being a signatory to the framework, Malaysia is committed to making those targets a reality. A major step would be the fostering of effective partnerships.

“Inter-ministerial cooperation, for instance, among the ministries related to special needs such as education, health, works and women, family and community development, would make the lives of disabled persons and their families much easier,” he says.

At the same time, non-governmental organisations (NGOs), parents and families can also cooperate to promote an inclusive, barrier-free and rights-based society, he adds. Terry Brougham, who previously worked as a teacher for the hearing-impaired in the United Kingdom as well as a former advisory teacher in special education, shared a model of early intervention in the UK.

In the UK, children at risk are monitored by a health visitor (a nurse who has additional training and qualifications) and are usually referred to a paediatrician.

“If the diagnosis is confirmed, a referral is then made to the local education authority (LEA). A visiting special education teacher who is an expert in the field will work closely with colleagues from other disciplines and also the child's parents.” A visiting teacher will also visit the child's home and assess his educational needs. A statement of special educational needs will then be prepared,” he explains.

Brougham who is presently doing his masters in special education at UM, says the role of the visiting teacher is to work with and help the family to maximise the child's development opportunities.

During the dialogue session, a panel comprising individuals from the education and health ministries, fielded questions from the audience.

In answer to a mother who asked whether her daughter who is dyslexic would have a different set of exam papers from the other students in the UPSR, Special Education Department planning and research division director Dr Haniz Ibrahim explained that she could apply for extra time but would not get a different paper.

He also said the Education Ministry will be placing students with various disabilities together in one residential vocational secondary school for the first time.

“The new move would involve 100 students who are visually or hearing impaired or have learning disabilities,” he says. Kamariah Mohd Amin, who has a son with Down's Syndrome, also shared her experiences on how she and a group of parents worked to get special needs pupils accepted into mainstream schools while Wong Huey Siew from the Malaysian Association for the Blind, talked about the issues and challenges faced by parents with special needs children.

“I know my parents had problems in dealing with government agencies as they could not speak Bahasa Malaysia well,” he shares.

Wong had started his talk by explaining how a sighted person should lead someone who is sight-impaired. “Let the sight-impaired person hold your right elbow or shoulder. Don't hang onto his hand or walking cane,” he says.

Various workshops on the child's needs from early childhood, childhood, adolescence and adulthood were also held.

At the end of each workshop, participants were asked to come up with suggestions on how all the different parties could work more closely together to meet the needs of the disabled.

These included the need for a one-stop and coordination centre for more information, more inter-agency coordination, all teachers to be exposed to special education so they could recognise a child who had special needs, counselling for young parents to deal with having a special needs child and provision for disability pension.

The organising committee will compile a list of parents' needs from their evaluation forms as well as from the proposals from the workshops. “Once this has been done, we will prepare an action plan which will then be forwarded to the relevant government agencies,'' says Sebestian.

Prof Daley says the provision of special education services in an inclusive, barrier-free, rights-based context is an attainable goal.

“The quality of life for all Malaysians, those with and without special needs, will be further enhanced by developing partnerships between the relevant parties.”