Inclusivity for PWDs: Process, progress and challenges


This is the first article of a three-part series on NECIC Conference 2022, which discusses matters pertaining to PWDs especially children with special needs, their families and those around them  

Dr Amar delivers his presentation for the plenary session of the NECIC 2022 Conference in Miri.

INCLUSIVITY upholds the concept of all human beings, regardless of their abilities or disabilities, having and deserving the right to be respected and appreciated as valuable members of their respective communities.

This is particularly important for children because the impact from society could affect them way up into adolescence and adulthood, as well as in their education, employment and basically, their day-to-day lives.

This subject of inclusivity was the centre of discussions during the Eighth National Early Childhood Intervention Council (NECIC) Conference, taking place in Miri from Sept 3 to 5 this year.

The event became the platform for the key speakers, comprising educators, professionals and also parents, to share with other participants their views, knowledge and experience in subjects pertaining to inclusivity.

Empowering society, policy-making

NECIC advisor Dato’ Dr Amar Singh H.S.S., who is a consultant paediatrician, has always been a fierce advocate for families and people with disability. Since 1978, he has been supporting and working with people with disabilities (PWDs), as well as establishing a number of family support groups and non-governmental organisations (NGOs) championing the rights and welfare of PWDs.

In his plenary session for NECIC Conference 2022, Dr Amar said inclusivity ‘could happen’ with support given to, and also given by, parents of children with disability.

“The context of inclusion is not just about education specifically; it actually involves everything in society – the acceptance of diversity and celebrating differences,” he said in his session broadcasted live via online.

Among some of the key points highlighted by Dr Amar were self-acceptance and celebrating diversity; acceptance of others; working on all areas in need of inclusivity – for both able and disabled groups; changing the mainstream press and social media conversations; working with other PWD groups or professionals and breaking down the barriers; and understanding and taking actions.

“Inclusivity in education, however, would ideally be a good starting point,” he said.

“In terms of education, inclusion isn’t just about putting children with disability into the mainstream class; it is about having the sufficient amount of support to accommodate and help them move forward in class.

“In a wider scope, improving the inclusivity in employment means better and wider job opportunities for the PWDs and enforcing their rights by breaking down the barriers, rather than just providing support.”

Advocacy for PWDs

In this regard, Dr Amar said he had been actively calling for a change in what he viewed as the ‘weak policies’ such as the Persons with Disabilities (PWD) Act 2008, which he pointed out as ‘not entirely protecting the PWDs and (the provisions) not being fully utilised’.

“It is important for lawmakers and the government to note that amending the PWD Act 2008 would give it punitive powers, is not rated as high (in priority) as in other areas.

“Though the PWD Act 2008 was inspired by the Convention on the Rights of Persons with Disabilities, elected representatives and governments seem to not have invested resources in awareness-raising and implementation.

“Thus, both (the PWD Act and the Convention) are little known by most Malaysians and thus, have limited impact on improving the lives of PWDs, their families and those involved with them,” he said, quoting from a report on ‘Advocacy for Disability Inclusion in Malaysia: PWD Rights Matter’ published this year, which he had co-written with other individuals and those from the relevant agencies.

The report recommended the policymakers and the government to engage with the PWDs as well as the parents and caregivers of children with disability to understand their concerns; strengthen the outreach and advocacy efforts in the East Coast states of Peninsular Malaysia and East Malaysia; make significant improvements in the inclusion of the accessibility for PWDs in the Malaysian education and vocational training systems, as well as employment; and harness the contributions from PWDs to enhance the economy and society at both local and national levels.

“Although change is vital, parents can only make the change by accepting themselves, their children and any disability that they experience, as well as to speak up and share their stories, which would not only empower themselves and their children, but also others having same or similar experiences,” said Dr Amar.

He also stressed about the need to stop ‘ableism’ and ‘lateral ableism’. Ableism is defined as discrimination in favour of able-bodied people, whereas lateral ableism is prejudice and discrimination from one group of disabled people against other.

“While we learn about self-acceptance, it is also crucial to learn about accepting others, and be sensitive to the needs of others so as to make the environment that we all are living in become inclusive.

“Being accepting is a good start,” he said, while adding on a powerful quote: “Only when we fight for the rights and needs of the children of other parents, will the rights and needs of our children be met.”

‘Equality versus equity’

According to Dr Warren, early childhood educators have a significant responsibility in helping to shape the belief and values of all children, regardless of their nature.

Echoing Dr Amar’s call, fellow speaker Dr Jane Warren also pointed out the need to take down the barriers in advocating inclusivity, which she regarded as ‘being crucial in early childhood education’.

However, the senior lecturer in the Department of Education – ‘The Early Years’ of the University of Wollongong in Australia also said equality might not be as effective as equity with regard to PWDs.

“Equality means that the able-bodied and disabled people are given the same resources or opportunities.

“The downside of this is both may have different abilities and they would not necessarily achieve the same results when given the same or similar tools.

“On the other hand, equity recognises that each person has different circumstances and thus, it sets out to allocate the proper, exact resources and opportunities needed to reach an equal outcome.

“At times, support may be relevant in helping children with special needs, yet treating everyone the same way doesn’t mean inclusion. Often, we see that integration is said to be great because we include children with special needs, but the fact that having them at the centre don’t necessarily help them in learning,” said Dr Warren, a trained early childhood teacher and researcher whose key area of focus is on children with disability in early childhood services.

According to her, early childhood educators have a significant responsibility in helping to shape the belief and values of all children, regardless of their nature, because what they have been and are learning in the early years of their lives would have a significant impact on their attitudes and behaviours.

“Inclusive education is not a charity, a special favour, a privilege, or a gesture out of kindness; it is a right – no child has less right than another,” she stressed, listing access to learning, participation, support and services highlighting the belief that ‘everyone is valued’ as some features of inclusivity crucially needed in education.

She also underlined the need for educator to communicate with families as part of the process, as this would help them engage better by understanding the circumstances faced by each child and family.

“We have to understand that not everyone needs to achieve the same things.

“Instead, the educators can help children, both able-bodied and disabled ones, embrace their differences, and work together to allow every individual achieve something within their own abilities.

“This is because inclusivity means that all children are welcome, valued, appreciated and supported.”

Dr Warren believed that the most viable way of interacting during the process of inclusivity could be achieved by adapting to the learning environment and resources so as to cater each child’ individual needs; appreciating and respecting the similarities and the differences; answering children’s questions honestly and respectfully; providing therapy for children with special needs in the isolation or segregation from other children – whenever necessary; and most importantly, the educators should focus on what children could do, instead of what they could not do.

Stating a reminder to the NECIC Conference 2022 participants, majority of whom comprised early childhood educators, Dr Warren said: “Inclusion is in everything, and by inclusivity, it is about allowing the person to participate in something without worrying about the restrictions, and indefinitely, it (participation) would benefit them in a long run.”

Relevant facilities, services and support

Dr Chea says crèches can provide more services so that parents of children with special needs would not need to fork up more money for childcare, rehabilitation and other services.

In his session, Dr Chea Chan Hooi talked about the relevant facilities, which he viewed as ‘not the most difficult part in advocating for families and parents of children with disability’.

“The appropriate services and long-term support are what keep their spirits up in times of difficulties,” said the general surgery specialist with experience spanning over 15 years.

Dr Chea said the existence of childcare services had greatly helped many working parents.

“Handling typical children is already an arduous task for most parents; it’s even more so for family of disabled children where special attention is needed.

“While not every family can afford a caretaker, a nanny or a babysitter, a childcare centre or crèche can possibly solve the problems faced by parents, especially those of children with special needs.”

Dr Chea also highlighter ‘financial barrier’ as among the biggest issues faced by families with disabled children.

Quoting a survey by researchers from Universiti Kebangsaan Malaysia (UKM), he said this could very well be the reason why many families were unable to get the much-needed help in taking care of children with special needs.

He said based on the survey, from over 1,800 families of children with special needs, only six per cent were comfortably off, with the rest of them having financial difficulties.

“It means that only a very small per cent of families are able to provide proper care to their children with special needs; the rest are struggling.

“It is also believed that childhood disability is considered as ‘a trigger event’ for poverty due to the additional costs required to get disabled children all the help that they need.

“The study also shows that parents of disabled children pay five times more on childcare costs than those of non-disabled children.

“This can cause significant (financial) drainage to the struggling families,” he said.

Setting-up a crèche at the workplace, said Dr Chea, would help ease the parents’ mental and financial stress, but to make this work, it would require significantly strong political will, financial support and manpower.

“There are crèches set up in bigger hospitals like Hospital Kuala Lumpur, but there’s none in Miri Hospital and Sibu Hospital.

“Crèches, I believe, can offer support in preventing parental and financial burnout.

“The burnout from taking care of disabled children could result in the increase of sick-days, and those unable to cope with the situation could end up being unemployed.

“Physical and mental burnout may also lead to family break-ups, which sadly, is the brutal reality faced by families taking care of disabled children in the country,” he said.

‘No one-size-fits-all solution’

Dr Chea acknowledged that in helping families with disabled children, there was no ‘one-size-fits-all’ solution, adding that welfare aid from the government could not possibly solve the problem wholly.

In this respect, he suggested the setting-up of a specialised childcare centre, which could also be a one-stop hub, accommodating the needs of these families at a minimal cost.

“Decentralise crèches, where multiple small-sized centres are set up at various different places to accommodate people from the different areas. This concept can provide more services so that parents wouldn’t need to fork up more money for childcare, rehabilitation and other services, as all of them could come under one specialised children centre that can also function as a one-stop centre,” he recommended.

Dr Chea also highlighted the importance of employers understanding the plight of their staff.

In addition, he also stressed about the need for more surveys and research works to be conducted in Malaysia, believing that key data from these researches could provide a significant push to the decision-making in policies.

In this regard, he called upon the government to endorse and provide inclusive education and expand the current system and infrastructures, towards equipping PWDs with skills and knowledge, as well as empowering this group.

“It is possible to support and increase employment for PWDs, with the government putting ‘soft pressure’ on corporations and mega corporations, such as what has been done by Petronas under its CSR (corporate social responsibility) initiative; it has been taking the lead by  employing PWDs,” said Dr Chea.

>The next article will touch on the roles of and challenges faced by parents in empowering children with special needs. Watch out for it tomorrow.