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IDEAS: Financial strain on parents with autistic kids overlooked

 | June 21, 2016

Despite the fact that the IDEAS Autism Centre provides subsidized full day care for their children, issues like logistics and transportation still pose as a prohibitive challenge to parents.

wan-jan

KUALA LUMPUR: An Institute for Democracy and Economic Affairs (IDEAS) 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 its 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.

The financial strain on parents with autistic children is often overlooked despite it being a complex issue, said IDEAS in a statement.

“We found that parents had to struggle with other financial responsibilities,” said IDEAS Chief Executive Wan Saiful Wan Jan. “At least 57 per cent of the parents we interviewed had to pay rent for their houses with 73 per cent of parents having three 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,​.”

​​​However, he added, as a result of enrolling children at the IDEAS Autism Centre, four of the parents were able to find employment while two others found part-time or volunteer work. “That’s 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.”

He was commenting on 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 ​assessed whether enrolling their children at the IAC has helped parents find employment, and if it has helped ease their financial burden.

“The average monthly household income of a family at our IDEAS Autism Centre is RM 3,961 compared with RM6,833 for a family in urban areas in the peninsula.​ We set up the IAC specifically to cater for families from underprivileged backgrounds,” said Wan Saiful. “This study confirms our suspicion that parents from this group face a lot of challenges with regards to caring for their autistic child.”

Despite the fact that the IDEAS Autism Centre provides subsidized full day care for their children, issues like logistics and transportation still pose as a prohibitive challenge to parents.

IDEAS Autism Centre provides early intervention care for autistic children below the age of nine, through regular therapy sessions with hypotherapy, hydrotherapy, pet therapy and other related activities including preparatory classes for integration into mainstream schools.

LINK : Policy IDEAS № 28: Financial Burden of Living with Autism


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