For immediate release
Kuala Lumpur, 21 June 2016 – The financial strain on parents with autistic children is often overlooked despite it being a complex issue, says the Institute for Democracy and Economic Affairs (IDEAS).
In IDEAS’ latest policy paper titled ‘Financial Burden of Living with Autism: A case study of parents at the IDEAS Autism Centre (IAC)’, author Shanuja Chandran assesses whether enrolling their children at the IAC has helped parents find employment, and if it has helped ease their financial burden.
Commenting on the study, IDEAS’ Chief Executive Wan Saiful Wan Jan said, “The average monthly household income of a family at the IDEAS Autism Centre is RM 3,961 compared with RM 6,833 for a family in urban areas in the peninsula. We set up the IAC specifically to cater for families from underprivileged backgrounds. This study confirms our suspicion that parents from this group face a lot of challenges with regards to their autistic child.”
“Despite the fact that the IDEAS Autism Centre provides subsided full day care for their children, issues like logistics and transportation still pose as a prohibitive challenge to parents. Our study found that some parents had to rely on family members or had to quit their jobs in order to ferry their child to and from the centre. Logistics alone can contribute to higher expenditure for these parents, as parents have to bear toll and petrol costs. But they cannot run away from it because there are no similar centres near where they live.”
“We also found that parents had to struggle with other financial responsibilities. At least 57 percent of the parents we interviewed had to pay rent for their houses, with 74% of parents having 3 or more individuals to care for in their household.”
The parents also stated that the RM150 financial assistance given by the Jabatan Kebajikan Masyarakat (JKM) was woefully inadequate. In fact, many parents were not even aware of the assistance provided,” added Wan Saiful.
“However, as a result of enrolling their child at our IAC, four of our parents were able to find employment while two others found part-time or volunteer work. That is because we provide full time care and not just for half a day. We are happy to learn that by sending their child to us, parents have the opportunity to work in order to try to escape from the urban poverty trap. Being able to work is really important because otherwise they will be trapped in the same circumstances forever.”