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A more inclusive way forward

THE recently concluded National Early Childhood Intervention Conference involved more than 500 families, professionals, therapists, policy makers and NGOs. Much deliberation was carried out to discuss the needs of children with disabilities and to try to chart a way forward.

We would like to share the five important directions that services for children with disability need to take in Malaysia.

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. To make this 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.

School inclusion

Despite national KPIs and targets for inclusions, the education for children with disabilities in the Education Ministry facilities is still done largely in a segregated fashion.

One obstacle is parents who do not have children with disabilities objecting to such an inclusion. There needs to be a radical shift in their mindset. Inclusion benefits all children and society in the long term. Research has shown that those who have some form of disability will benefit those who do not and vice versa. Another obstacle is that currently less than 10% 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 on inclusion KPIs.

Family/Parent Empowerment

Currently, few services developed or run by government agencies and non-governmental agencies have parental involvement in their planning. 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.

It is also vital that families mentor families in helping them move forward in support of their children.

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.

The undergraduate training in most universities is extremely poor for disability conditions that affect 15% of all our children.

They come out to work with almost no skills or idea on what to do. It is vital for all medical university programmes to change and offer sufficient and adequate training in this area.

In addition, all teachers should have basic training on disabilities as part of their routine undergraduate teacher training courses.

Non-governmental organisations that run early intervention programmes also need opportunities for the staff working with them to get better quality training to improve the quality of early intervention services.

Bring balance to the private/corporate sector

Many parents have expressed their distress to the NECIC regarding the rapid increase in fees charged by private professionals.

It is vital that the care and support of children with disabilities do 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, have an upper limit.

In line with the recently passed Allied Health Act, it is timely that such a fee schedule be created.

In addition, unconventional therapies that feed on the fears of parents should be curbed or regulated.

It is 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 who have 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.

All of society needs to be included in the country’s growth, disabled or otherwise.

Inclusion is not about success but about acceptance.

A successful, developed country is one that leaves no child behind.   DATUK DR AMAR SINGH HSS Immediate past president Current president DR WONG WOAN-YIING The STAR Opinion Letters Tuesday, 6 December 2016

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