Closing the gap in services for children with disabilities

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This is an open letter to the ministers and ministries of Education, Health, and Women, Family and Community Development (specifically the Social Welfare Department) to highlight the key gaps in our services for children with disabilities.

The National Early Childhood Intervention Council (NECIC) is a registered coalition of parents, therapists and professionals from a large number of NGOs and agencies working with and advocating for children with special needs. We recognise that the new government has many challenges and that many proposals have been put forward for change. So much so that, at times, it may be difficult to see the forest for the trees.

We would like to outline five key issues in our services for children with disabilities and ways to overcome them. If these key areas are not addressed, we will continue with the current poor service provision for these children and their families.

Ministry of Education

Issue: Limited inclusive education for all children

Recommendations:

1. Unit Pendidikan Khas (Special Education Unit) should be changed to Unit Pendidikan Inclusive (Inclusive Education Unit)

2. Implement a national shadow aide programme

Our Malaysia Education Blueprint 2013-2025 (MEB) fully supports inclusive education (the NECIC helped provide input for the Blueprint). However, the majority of children with special needs and their families are facing difficulty and resistance when requesting inclusion. The Ministry of Education (MOE) provides data suggesting that inclusion is improving but much of this is integration, not inclusion.

Children with special education needs are still segregated in separate classes despite many having abilities to do well in mainstream education. We will never reach the MEB target of 75% inclusion by 2025 if we continue down this path. The key change required is to transform the Unit Pendidikan Khas (Special Education Unit) to Unit Pendidikan Inclusive (Inclusive Education Unit) to reflect the MEB. This will change the entire focus of the department and teachers on the ground. As long as we are focused on “special education” we will never be inclusive. We should aim to shut down all special education classes and special education teachers should support mainstream teachers.

Secondly, we need sufficient numbers of well-trained teachers and resource personnel to aid and educate children with special needs in mainstream education classes. We urgently require a shadow aide programme to support teachers. MOE has not put this vital resource in place and parents who try to make available the provision are often hindered by local authorities. A shadow aide programme is a major step towards inclusion.

Ministry of Health

Issue: Limited service provision for children with disabilities

Recommendations:

1. Engage medical universities to improve curriculum on special needs

2. Decentralise care – meet the disability needs of rural communities

Most doctors who qualify do not know what to do with children who have disabilities. Many have received very limited training in their undergraduate days on understanding children with special needs and their families, conducting assessments, and plan management. It is vital that we equip doctors with the necessary skills as 15% of all children have disabilities. The Ministry of Health (MOH) must serve as a pressure group with MOE to engage local medical universities to dramatically improve their training curriculum on special needs.

An additional concern is that most services for children with disabilities are concentrated in urban settings. The rural community is grossly underserved and poorly reached. There is a need to bring professional services to these communities rather than force them to travel to urban centres, further exacerbating their burdens and depleting limited resources. Our regional hospitals have many specialists and therapists; it is time to make it a policy for them to spend time and serve in the community.

Social Welfare Department

Issue: Limited Service Delivery at Pemulihan Dalam Komuniti (PDK) centres

Recommendation:

1. Upgrade and transform all rural EIP services to provide quality care

Children with special needs require an early intervention programme (EIP). This is crucial if they are to discover their potential, get an education and undergo employment training. Most of the quality early intervention programmes are provided by NGOs; the vast majority are in urban areas. The rural communities are served by community-based centres called Pemulihan Dalam Komuniti (PDK) under the purview of the Welfare Department.

Although they play a vital role, the vast majority of PDKs have limited resources and end up just functioning as “day care” centres. There is an urgent need to provide quality EIP services in rural, underserved communities. The MOH, MOE and Ministry of Women, Family and Community Development need to work together to make this happen.

The inclusion of children with special needs in kindergartens and preschools must be a vital part of this plan. The NECIC has formal training modules for staff working in EIP and preschool inclusion. We would be happy to support the training of staff.

In summing up, the NECIC appeals to the ministers and relevant ministries to make real the rights and needs of 15% of our population that are often neglected. If these five key initiatives are not put in place, we will continue to fail these children and their families.

Please do not let the dreams of any single child with disability fail because we did not offer them a chance to realise them.

Dato’ Dr Amar-Singh HSS (Advisor)
Dr Wong Woan Yiing (President)
National Early Childhood Intervention Council (NECIC)