By Batrisyia Jay
Raising a child with special needs requires parents to always put in the effort of having more time in order to pay attention to the child’s needs and education—in other words, it can be challenging.
No two disabled children are the same as they may be diagnosed with various complex disorders such as Mental Retardation, Pervasive Developmental Disorders, Autism, Asperger’s or even Tourette’s syndrome.
The number of complex disorders that exist makes it harder to successfully identify which category a disabled child belongs to, particularly when there is no intervention for the child at an early age.
Moreover, if coupled with added physical disabilities such as deafness, blindness, or other medical conditions that often affect disabled children, this makes it even more challenging to identify effective treatment for the child.
Challenges for Parents
In today’s age where information is only a click away, parents are often in the know and are exposed on the best ways to treat children with these complex disorders as they make it their task to do extensive online research regarding the matter.
With the increasing availability of niche websites, books and even national organizations, many are of the opinion that parents of children with special needs are not short of aid.
Be that as it may, these parents still find it a challenge to raise a child with disabilities, particularly when the task is being shared between just the two of them. Finding a third party who can provide the care needed for their child can be difficult as it is hard to find someone with the right skills, understanding or patience required to raise and care for a child with special needs.
Moreover, sending their child to day-care centres or schools that cater for special needs children can also be a challenge, as the fees are oftentimes unaffordable for most parents.
In time, this will result in parents having little time to spare for themselves or even family activities, thus putting a strain on their relationship. To add insult to injury, these parents find themselves criticized and blamed by the public or even their own extended families over the behaviour of their child, resulting in them avoiding having to attend community events or even family gatherings with their child.
Lightening the Burden
With the aim to lighten the burden of parents with special needs children in Selangor, the state government has decided to lend a helping hand in the form of financial assistance starting from the beginning of this year.
Known as the Bantuan Khas Anak Istimewa Selangor (AnIS), RM 500,000 has been allocated specially for the programme for 2019. According to Selangor Menteri Besar, Amirudin Shari, each family can draw a maximum amount of RM 5,000 to be used for the child’s various needs.
With this financial assistance, parents will now be able to enrol their child into a proper centre that caters specially for children with special needs without having to worry about the expenses needed. As was stated by Amirudin, the funds can also be used to purchase equipment that are necessary for the rehabilitation of these children.
On 19 July, Amirudin Shari stated that financial assistance in the form of a subsidy of RM 200 would be provided to special needs children through direct funding to intervention centres in the state on a monthly basis.
The programme is co-organized with the Selangor Disability Action Council (MTOS), who are tasked with outlining core guidelines and conditions for a selected centre of the intervention before these centres are approved by the Social Welfare Department (JKM).
Commenting on this, Amirudin said that most of the fees for the underprivileged are low, and schools are subsidizing special needs children through the provision made by the state government.
“Early intervention centres for children with special needs cannot escape the high cost as the support systems and special equipment in providing complete infrastructure are costly, and it is unlikely that they will reduce the fees for the parents, so this subsidy can help to increase the schools’ facilities,” he said.
On 2 October 2018, it was reported that the state government is working to establish an early intervention centre for special needs children that will cover aspects of self-care, social and education of these children.
According to EXCO of Health, Welfare, Women’s and Family Empowerment, Dr Siti Mariah Mahmud, a total of two nurseries in each state assembly will be selected for the pilot project. To date, it has been reported that 11 intervention centres have submitted applications from 152 AnIS members in total.
Besides aiding parents and intervention centres for special needs children, the programme also trains kindergarten and childcare centre teachers on the proper ways to manage various types of disabilities found in children with special needs. On this note, the state government plans to set up the Anak Istimewa Selangor (AnIS) teachers’ programme in several schools in each state assembly to look after children with special needs.
According to Dr Siti Mariah, the initiative was implemented to ease the burden of parents with special needs children as they often have no choice but to send their children to a high-cost kindergarten that specially caters to children with special needs.
“So far, the pilot projects are in progress and we have selected 75 AnIS teachers from among the kindergartens around Selangor to train them on how to care for and educate children with disabilities,” she said.
Dr Siti Mariah noted that these schools are optimistic about accepting children with special needs even though they are not a centre that caters specifically for special needs children. As a result, there will be no social gap between children with disabilities and normal children.
“In this way, these special children will not feel isolated, and even normal children will be able to learn to accept the group as a part of their friends,” she said, adding that the stigma that having children with disabilities is a burden must be removed and is of the opinion that these children are “the provision that God has given us”.