The way forward for children with disabilities in Malaysia
The recently-concluded National Early Childhood Intervention Conference, opened by Unicef representative for Malaysia Marian Clark-Hattingh, involved the participation of more than 500 families, professionals, therapists, policy makers and NGOs.
Much deliberation was carried out to discuss the needs of children with disabilities and try to chart a way forwards. Parents had a lot of deliberations with professionals and policymakers on current services and practices as well as what is needed for the future.
We would like to share with you five important directions that services for children with disability need to take in Malaysia.
Firstly - pre-school inclusion
It is vital that the majority of children who are identified with some disability have their preschool education in mainstream kindergartens. For this to happen we must focus less on segregated, early intervention centres (EIP) and more on inclusion in kindergartens.
We must accelerate the entry of children with disabilities directly into kindergartens. For this to happen, kindergartens must be more open to accept children with disabilities. In addition EIP workers need to partner with kindergartens and work there to support such an inclusion.
Secondly - school inclusion
Despite national KPIs and targets for inclusions, the education for children with disabilities in the Education Ministry facilities is still largely in a segregated fashion. One obstacle is parents (who do not have children with disabilities) that object to such an inclusion. There needs to be a radical shift in the mind-set of these parents. It must be recognised that inclusion benefits all children and society in the long term.
Education is not a race to some ‘professional future’ but should be considered as a journey in discovery and development. Research has shown that those who have some form of disability (differently able) will benefit those who do not; and vice versa. Another obstacle is that currently less than 10 percent of all children with special needs are identified by the Education Department.
Unidentified children number in excess of 500,000. The vast majority are currently in school, unrecognised, with no provision of services and often placed in classes for ‘weaker children’. Some schools even reject these children completely. Schools must stop focusing on achievement KPIs but focus on inclusion KPIs (it may be helpful if we could rebrand Special Education Division to Inclusive Education Division). ‘Leave no child behind’ must be our motto.
Thirdly - family/parent empowerment
Currently most services developed or run, whether by government agencies (Health, Welfare, Education) or by non-governmental agencies, seldom have parental involvement in their planning. There may be a token parent representative in national disability councils.
It is vital that we create opportunities for parents of children with disabilities to play a leadership role. These parents are better adapted in knowing what their children need and can often design services that better meet the needs of their children. It’s time to listen carefully and clearly to parents and obtain their ideas as to the development of services for their children across all agencies and NGOs both at local and national levels.
It is also vital that families mentor families in helping them move forwards in the support of their children. In the just concluded conference, different parents groups have been reaching out to each other through social media to form a united voice.
Fourthly - training of professionals
Professionals in the Health, Welfare, and Education government agencies have limited training and awareness of children with disabilities and their needs. Most health professionals are poorly trained (an understatement). The undergraduate training in most universities is extremely poor for disability conditions that affect 15 percent of all our children. As such they come out to work with almost no skills and ideas what to do.
It is vital for all medical university programmes to change and offer sufficient and adequate training in this area. In addition as we strive for full inclusion of these children in mainstream classes, all teachers should have basic training on disabilities as part of their routine undergraduate teacher training courses.
Non-governmental organisations that run early intervention programs also need opportunities for the staff working with them to get better quality training so as to improve the quality of early intervention services we offer these children.
Finally - bring balance to the private/cooperate sector
Many parents have expressed their distress to the National Early Childhood Intervention Council (NECIC) regarding the rapid increase in fees charged by private professionals in offering services to children with disabilities. It is vital that the care and support of children with disabilities does not become a profiteering business. We recognise that trained professionals should get adequate wages but this should not be unduly inflated.
The NECIC strongly advocates that the government and its agencies work to create a fee schedule so that all forms of therapy for children with disability, including early intervention services, has an upper limit to the cost of these services.
In line with the recently passed Allied Health Act, it is timely that is such a fee schedule be created. This should include fee schedules for speech& language therapy, psychology assessment/therapy, physiotherapy, occupational therapy and others. In addition, unconventional therapies that feed on the fears of parents should also be curbed or regulated.
Malaysia has reached the stage where services for children disability are rapidly changing and growing. It's important that we all play an active role in ensuring the services developed are to support, not exploit families. The NECIC strongly advocates that the government be more involved in supporting parents with children with disabilities in their financial needs and in the provision of services.
The current provision of posts within government agencies for critical therapists in the disability area is grossly inadequate. The government must be committed to encourage more individuals to work in disability fields by providing job opportunities/posts.
All of society needs to be included in the country’s growth; disabled or not.
Inclusion is not about success but about acceptance.
A successful, developed country is one that leaves no child behind.
DR AMAR-SINGH HSS is immediate past president and DR WONG WOAN-YIING is current president of the National Early Childhood Intervention Council (NECIC).