Heart of the Matter: What happens after special needs adults end formal schooling?
In the special needs sector, the term “cliff effect” describes the problems faced by parents when their special needs children turn 18 and leave school. CNA’s Heart of the Matter podcast discusses the big gap in ensuring everyone on the spectrum has access to good care facilities.
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Engaging persons with special needs (Photo: St. Andrew’s Autism Centre)
SINGAPORE: When Bernard Chew’s autistic son turned 18, he and his wife had to find a Day Activity Centre (DAC) that could keep him occupied. It was ironic that the St Andrew’s Autism Centre where Mr Chew is CEO, had run out of spaces and he had to look elsewhere.
His experience, he says, is not uncommon and is symptomatic of the struggles of parents with special needs children.
“It's clear that there are not enough places in Day Activity Centres (DAC) in Singapore. Other than DACs or sheltered workshops, there just isn't enough of these services,’’ said Mr Chew.
In the latest episode of the Heart of the Matter podcast, host Steven Chia discussed the issue of post-school options for people with special needs.
Clement Phua Neo, a father of a 47-year-old son with an intellectual disability, and Jean Loo, deputy director for advocacy and community engagement at the Rainbow Centre, were also guests on the show.
Mr Chew estimated that more than half of those who graduate from special education schools find it a struggle to transition into the workforce, while Ms Loo noted that less than 10 per cent of those from her centre are “work ready”.
The difficulty lies in how varied the needs of this group are.
“The current discussion about disability ignores the fact that ... some will require a degree of care and support for the rest of their lives. In the whole talk about employment … (we are) ignoring the needs of those on the more severe end of a disability spectrum,’’ said Mr Chew.
A more inclusive ecosystem must include daily activities for those who simply cannot work.
Sharing his own story, Mr Phua, 76, said his wife was the sole caregiver for his son. When she died of cancer, it was traumatic for their son because she used to do everything for him – even putting toothpaste on his toothbrush.
It took Mr Phua two years to get his son to be more independent. And to prepare for his eventual demise, Mr Phua placed his son in a hostel for five days a week so that he can get used to living without his family. But even this arrangement has challenges - the hostel is closed six weeks a year.
“I (can’t) have a situation whereby for six weeks in a year he has no one,’’ he said.
For Ms Loo, the solution cannot lie with just people in the sector or the service providers. Everyone, she said, needs to come together. “You're looking at how the average Singaporean can be equipped with skills to know how to interact with a neighbour with special needs.’’
Here are some highlights of the discussion:
WHOSE JOB IS IT TO SCALE UP RESOURCES AND INFRASTRUCTURE?
Jean Loo: “It's time to act, it's time to look at how these conversations shouldn't just sit in social services and Special Education (SPED) schools. But (also) what mainstream organisations are thinking (and can do).’’
Bernard Chew: “Certainly, we need greater collective effort ... Nonetheless, the social service agencies (SSAs) and the services that the SSAs run will remain a very critical part of this whole ecosystem ... If we don't run those services, they're going to be staying at home with their parents. The burden of care entirely passes on to the parents.”
WHAT DOES IT MEAN TO BE FULLY INTEGRATED?
Clement Phua: “If you build homes for elderly and they're all by themselves, it is going to be terrible. So, we should start thinking about integrated living within an HDB block. You have the elderly, we have special needs (people), and you have mainstream (people) with facilities for all parties.”
Chew: “Inclusion is costly and effortful as a society, whether all segments of society, whether it's the Government, the community, the SSAs who are running the services, all of us have to be prepared to exert effort.”
The reality is, inclusion is an easy word to talk about. Not quite an easy (thing) to do.
ON COST
Phua: “I was a little shocked to find out that the cost per resident (at one special needs adult home) is more than S$5,000. And after the subsidy, it is still S$1,800. It is not a small sum. And even without having a kid who is with special needs, it is already a big struggle for most young parents.”
For the full conversation, listen to the podcast:
