First published in theSun on 13 April 2017, here.
MALAYSIAN-produced film Redha (which was long-listed for the Best Foreign Language Film at this year’s Academy Awards) features Nam Ron as the father of a boy with autism who initially refuses to accept his child’s condition. Eventually, he comes to terms with his son’s identity and learns to educate him in the right way.
In the film, the father is forced to move from Terengganu where he had a lucrative business, all the way to Kuala Lumpur, to engage the educational and therapy services required for children with special needs. This tells us the difficulty of families in small towns and rural areas, who may not have adequate access to such care.
What the film does not show us, however, is just how expensive these services are. Children diagnosed with autism require speech and occupational therapy sessions at least once a week. These sessions typically cost RM100 for 45 minutes on average, but the cost can increase depending on the severity of the condition on the autism spectrum.
For families that are less well-off, the news that a child has autism can be a nightmare because of the costs involved. If a child receives four occupational therapy sessions a week, for instance, this would take up about 13% of the average household income for a family in the bottom 40%. In 2014, the mean monthly gross household income of the bottom 40% in urban areas was RM2,928, according to the Economic Planning Unit.
In addition, once a child is diagnosed with autism, it is more likely that one parent is forced to resign from his or her job to care for the child, thereby reducing the household income and bringing even more pressure on the family’s finances.
The government does have some financial assistance, where the Welfare Department provides a monthly aid of RM150 for differently-abled people who are registered with them. However, this is hardly sufficient especially given the high cost of learning aids like books and materials. This amount would only cover one therapy session a month, for instance. In fact, according to the Autism Society of America (ASA), the average lifetime cost of caring for a child with autism in the United States is US$2.4 million, or about RM9.6 million. This figure includes medical treatment, special education, housing, and indirect costs like lost productivity.
Each year in April, those involved in providing services for people with autism celebrate Autism Awareness month. This year has been no different, where our autism centre for the bottom 40% of families will be involved in a series of activities bringing parents of our students and the surrounding community together.
It is because of these economic challenges that low-income families with autistic children face that such centres exist. Indeed, more such centres have emerged in recent years, which indicates there is a growing demand especially for those catering to the bottom 40% of families. This is a healthy and positive trend, which demonstrates the ability of private citizens to plug the existing gap in the market, which the government has not sufficiently been able to fulfil.
That said, much more needs to be done structurally, and from the very top. Selected government schools already have what is called a Special Education Integration Programme, which are classes dedicated to special needs children. However, the limitation here is that children with varying special needs conditions are put together in a single classroom, which means those with autism are placed together with students with, for instance, dyslexia, ADHD (attention deficit hyperactivity disorder), non-verbal learning disabilities and others.
Different learning disabilities require different teaching techniques and skills, which is impossible to fulfil given the range of conditions in one common space. Teachers also need to be given specific training for the specific special need in question, which may not necessarily be the case since they are obliged to teach all students at one go. Finally, the teacher-student ratio for a child with autism needs to be ideally one to three or four students (for severe cases, it ought to be one to one), which is not achievable by any measure in large classroom settings.
Again, to improve these conditions, all this requires funding, and we are aware of the fiscal challenges the government is facing. Already the number of children enrolled in special needs programmes more than doubled between 2006 and 2013, according to the Ministry of Education. Judging by statistics in the United States where one in every 68 has autism (as of 2010), this number may steadily grow.
Given these expectations, all stakeholders need to band together with solutions to help ease the economic burden of autism, most especially for the poorest and most vulnerable in society. First, there needs to be training and awareness to a much wider audience, so that businesses can even access training and guidance on how to become autism friendly employers.
Second, a much more comprehensive form of care needs to be provided to parents. For example, under the benefits available through the United Kingdom’s National Health Service, carers can request a trained caregiver to relieve them for a few hours at a time, and this service is often offered free of charge or at a subsidised rate.
Finally, targeted assistance can be provided to families with autism, for instance where vouchers for private services could be provided for by the government. Vouchers are an efficient way for the government to fund the individual with autism, and allows families to select the services they consider most relevant and important for their child’s needs. Another good example is a Personal Independence Payment, which is a means tested allowance that takes into account an individual’s daily living and mobility needs, but does not tie that allowance to the use of related services, hence allowing for choice and autonomy in how the benefit is allocated.
Nam Ron’s character in Redha was fortunate enough to be able to afford quality care and services for his son, who could eventually swim competitively as a teenager. (In fact, many adults with autism are gifted musicians and artists). With streamlined collaborative efforts of the community, private sector, government and charitable foundations, even the most marginalised in Malaysia would be able to achieve similar goals for their children with autism.
Tricia Yeoh wishes all readers Happy Autism Awareness Month.