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The financial burden for families with autistic children (Part 1)

photo credit: Autism Children's Centre

ASD refers to a spectrum of psychological conditions characterized by abnormalities in social interactions and communication, as well as severely restricted interests and highly repetitive behavior. ASD includes autism, Asperger syndrome, and atypical autism. Close to 30000 Singaporeans have varying degrees of autism.

by Jonathan Koh

Mrs Sng, 35, has three children. Her youngest son, JY, turning 3 this year, is diagnosed to be Autistic Spectrum Disorder (ASD).

“JY is fascinated by moving things such as the standing fan and the stove. And he will climb close to these objects to touch them, without fear of injury. It is extremely dangerous,” Mrs Sng says. She is a stay-at-home mother.

Early intervention in the window of opportunity

Experts believe that there is a window of opportunity in autistic children’s preschool years, ranging from age two to five. During this period, autistic children are best able to learn socially acceptable behaviors. The most cost-effective approach for the family is thus to focus on early intervention, not late rehabilitation.

This belief drives parents like Mrs Sng to send their children for early intervention therapies. Research shows that for early intervention to be successful, it has to take at least 35 to 40 training hours a week. This works out to around 6 hours a day.

JY is attending a government-run Early Intervention Program for Infants or Children (EIPIC). A check with MCYS shows that there are “12 government-funded Early Intervention Programme for Infants and Children (EIPIC) centres that cater to children from birth to six years old who have special needs.”

Gripes with government-run EIPIC

Another parent feels that some early intervention centers are not targeted to meet the needs of children diagnosed with ASD. One such parent, Mr Ong, says that the curriculum is not structured in a “comprehensive or targeted way to meet the needs of autistic children”. The centre which his son attends is “typically attended by children with varied conditions – e.g. Cerebral Palsy or Down Syndrome, which make it difficult to have customized programmes for autistic individuals,” he says.

According to Mr. Ong, while there are other early intervention centres that do have an ASD-specific programme, the cornerstone of such government-run centres is about teaching such children to be independent, which in his opinion is not enough. Some centres also bring children out to play, or hold outreach programmes with members of the public. He believes that this period of window of opportunity for autistic children is short and critical and should be better spent.

Going private – the huge financial costs

As such, Mr Ong enrols his 4-year old son Michael in private therapy.

Michael is attending private speech therapy (around $600 a month); private Applied Behavior Analysis (ABA) therapy that focuses on reinforcing right behaviors (which cost $2000 per month); and normal childcare on some days. This is a huge financial burden on Mr. Ong who is the sole breadwinner of his family. He earns around $4000 per month. “As middle-income parents, we are just able to afford some therapies for our child. I have no idea if lower income parents are able to cope,” he says.

Government-run EIPIC centres, on the other hand, charge only $120 per month, after MCYS subsidies. With just 6 hours of intervention in EIPIC, parents are told to carry out the bulk of intervention themselves. However, most do not know how. “No one tells us what courses are suitable or where to get trained.” Mrs Sng says.

She knows of parents who are forced to give up their jobs to spend more time training their children or to be available to bring their kids for various therapies. The financial situation of a family becomes a critical issue overnight, with parents facing the extra costs incurred by having a special needs child coupled with the loss of an additional income.

Clutching at straws

Mrs Sng also pays for home therapy for her son JY. This costs $45 per hour.

Her main concern is that some of these home therapists are not MOH-accredited; – for instance, some of them are on the Filipino employment pass. However, many desperate parents usually still go ahead regardless of reliability, due to the scarcity of such trained personnel here in Singapore.

“It puts us in a vulnerable position as we could be wasting not just money but the precious time of our kids too,” Mrs Sng says, alluding to the limited window period.

She likens that to clutching at straws, and claims that there have been cases where parents have met unethical therapists. Also, other parents resort to unorthodox therapies like special diet or acupuncture, which are all not supported by MOH.

“After spending close to $10k in 5 months over JY’s home therapy, and seeing how the therapist does not attempt to stretch him but keeps doing the same things, I'm really feeling distressed now over the time and money wasted,” she says.