SINGAPORE: Every evening, Ernest Wong takes five minutes to walk from the front door of his house to the dining table, four metres away.
His steps are unbalanced, even with the aid of a walking stick the 42-year-old - diagnosed with cerebral palsy as a toddler - grips tightly.
And every evening, his mother sits at the table, watching his every move with watery eyes – while not lifting a finger to help her son.
“My heart hurts when I see him struggle, but I’m teaching him to be independent,” said his sole caregiver June Lim, her hands trembling from Parkinson’s. “Who’s going to help him if I don’t?”
Mr Wong, who has impaired vision and scoliosis, has lived his life predominantly by the side of his mother, now a 73-year-old retiree.
He still uses a wheelchair when outdoors; at home, he also gets some assistance to move about using 12 grab bars placed along the corridor.
Mdm Lim watching her son, Ernest Wong walking with the help of wall-mounted walkers. (Photo: CNA/Mak Jia Kee)
“I always tell him: ‘I’m teaching you to do things. If not, when I die, who’s going to look after you?’” said Madam Lim.
She wants to buy a small flat for Mr Wong before she dies, but frets about how her savings won’t cover his conservancy charges. He is unemployed.
More worryingly, she isn’t 100 per cent certain her son can live alone.
The mother-son duo have looked into adult disability homes, but to Mdm Lim, nobody will understand or take care of Mr Wong’s needs as well as she does.
“It will be easier if he goes first, so I can take care of him for the rest of his life. But I don’t think that will happen, so I need to start making plans.”
Mdm Lim assisting her son, Ernest Wong, as he sits on a chair. (Photo: CNA/Mak Jia Kee)
Hers is a dilemma faced by many caregivers of people with disabilities (PWDs) - particularly the ageing ones.
Data from the Ministry of Social and Family Development (MSF) showed that one in four such caregivers were above 65 years old, with a median age of 57. Almost 70 per cent of them were female.
"Many caregivers may not have formalised long-term care arrangements for their dependants due to a variety of reasons, and PWDs may face an uncertain future without a proper support network in place," said Assistant Professor Matthew Chen from the geriatric medicine division at the National University Hospital (NUH).
A slew of initiatives is available to help PWDs negotiate eventual independence, spanning government employment, financial and infrastructural support; social and community services; and living arrangements operated by non-profits or private sector organisations.
But gaps remain, including in areas of medical costs, lifelong learning and public awareness, according to caregivers, social service agencies, advocates and experts interviewed by CNA.
In a speech in October last year, Singapore’s Prime Minister Lawrence Wong himself acknowledged that more can be done in this space.
“We are studying how we can give more help to caregivers and persons with disabilities, to enable them to plan for their needs, goals and aspirations, and to update these plans as their life stages and family circumstances change.”
“We are also looking into ways to enhance and extend the range of support to enable persons with disabilities to continue to live independently in the community,” he added.
“We hope this will reduce the emotional and mental strain on caregivers, by assuring them that their loved ones with disabilities can continue to live well in the community, even after they are no longer able to care for them.”
For almost 20 years, Mr Cheng Chiang Yong has spent five days a week away from his home. But the bond between the 54-year-old - who has an intellectual and speech disability - and his mother Tan Hum Seow remains as firm as ever.
When the 77-year-old told him she would die one day, he shook his head violently and covered her mouth with his hand.
“He always does that. He hasn’t accepted that this will one day happen,” said Mdm Tan.
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, showing an artwork that he painted, at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
Mr Cheng only started walking at age five, and eating on his own at seven. He was diagnosed at around eight years old.
As it became more difficult to care for him as he grew older, Mdm Tan started looking at options such as the residential training hostel where Mr Cheng now lives most of the time - even though it initially felt like she was “abandoning” him.
But she started relaxing when she observed her son improving and acquiring skills to be independent, while experiencing communal living at the Ubi Hostel run by TOUCH Community Services.
Mr Cheng is now employed by JOURNEY - a brand under TOUCH that represents the creative output of people with intellectual disabilities - where he paints artworks that get sold.
He has saved enough money to give his mother a red packet every Chinese New Year, and even fund her vacations.
“I would never imagine that my child would be able to bring home an income,” Mdm Tan said, beaming with pride.
She urged other caregivers to let go of any reluctance to adopt a hands-off approach. “Let your child have a purpose to do and learn something, so they can earn a living out of it.”
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, hanging a calendar at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
At the Ubi Hostel, residents must hold jobs, clean their own space, buy their own food and travel by themselves.
They are also taught financial tips on how to save money, before going home over the weekend to spend time with their families.
“Life will be even more challenging if we protect them too much,” said TOUCH’s head of caregivers support group June Sim.
She stressed that the hostel was not an end destination for PWDs, with the goal being integration back into their own homes and communities.
“It is important to increase awareness to show how capable persons with disabilities can be, and help them play an integral part in the wider community.”
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
This is a key focus of both disability agency SG Enable as well as the Enabling Masterplan 2030, a national roadmap for the government and community to work together to support PWDs.
“We’re a nation that has made good progress in disability inclusion over the years, and we will continue to strengthen our ecosystem of support to provide persons with disabilities the access to achieve their potential, and participate as integral members of society,” said SG Enable’s CEO Lee May Gee.
Through three enabling services hubs across Singapore - with more to come in the next five years - her agency hopes to bring community support closer to the homes of PWDs and their caregivers.
“As these hubs become more known by the community, it will create more opportunities for everyone of all abilities to connect, engage and participate in activities together,” Ms Lee added.
In September, SG Enable and MSF also announced a pilot Enabled Living Programme running from this year to 2028. It will involve up to 250 low-income PWDs with low to moderate support needs staying in a cluster of public rental flats, and receiving support from an on-site service provider.
“Enabling PWDs to live independently is essential for their empowerment, dignity and meaningful contribution to society,” an MSF spokesperson told CNA.
“The government is committed to provide a range of solutions to enable PwDs to age in place or access suitable living arrangements.”
For PWDs with up to high support needs, an adult disability home may be a better fit, social service agencies told CNA.
The THK Home for Disabled @ Sembawang, run by Thye Hua Kwan Moral Charities, is the residence of about 160 PWDs with either ageing caregivers or unfavourable living environments in their own households.
An adult disability home is not a nursing home, however, and residents are not solely confined to four walls either.
Though they still get some assistance in daily living, they are also brought out for various activities such as walks, picnics and trips to the zoo; and also trained to be independent, said Ms Chloe Lee, Superintendent at THK Home for Disabled @ Sembawang.
“It’s like a community where the residents find strength in one another and the staff are like parents.”
Experts CNA spoke to however pointed out that adult disability hostels, homes and other living arrangements can be limited in capacity, with long waiting lists to boot.
Services for adult PWDs, including residential models, "are still scarce, not scaled (and) not well-coordinated and communicated", said Member of Parliament Denise Phua, who sits on the Government Parliamentary Committee for Social and Family Development.
At the Down Syndrome Association, an adult enhancement programme places emphasis on independence.
Students are trained on fine motor skills to help with employment, and taught how to control their emotions and communicate effectively with peers.
“We teach our learners functional life skills, how to live independently in the community, in their homes, as well as employment skills to get jobs,” said Evelyn Lai, executive director of Down Syndrome Association.
Members of Down Syndrome Association attend training classes to help develop important life skills that support their independence and overall well-being. (Photo: CNA/Mak Jia Kee)
“People with Down Syndrome face regression issues where they lose their abilities quickly. So there is a need to train them to be independent through cognitive life skills.”
During the programme, students also simulate workplace settings and learn how to purchase groceries at the supermarket.
“It’s very hard for people with Down Syndrome to manage money and this repeated practice is very important for them to maintain their independence,” Ms Lai added.
Ms Phua, who's also president of the Autism Resource Centre, similarly stressed the importance of continuing to equip PWDs with practical independent living skills, from their schooling years and into adulthood.
Retiree Regina Aun’s son Benjamin Lee, 36, has been enrolled in the Down Syndrome Association's programme for 18 years. She sees it as a way of “opening up his world”, and for a semblance of what life would be like on his own.
When she first found out that he had Down's, Mdm Aun was “completely devastated” by the prospect of the challenges ahead for him – but quickly came to her senses to start thinking about his future.
Regina Aun and her son, Benjamin Lee, at the Down Syndrome Association in Bishan on Dec 12, 2024. (Photo: CNA/Mak Jia Kee)
“I wasn’t very financially well-off, I started planning for him since he was a baby so there would be enough funds if he goes to an adult disability home,” said the 66-year-old.
She also called for more medical subsidies, citing how Mr Lee has already shown signs of failing eyesight, joint pains and dementia - all conditions typically faced by Down Syndrome patients.
Dr Sean Quek, a family medicine physician who’s worked with PWDs, said the cumulative costs of treatments - coupled with the need for assistive devices, specialised education and early intervention programmes - can place a "tremendous" financial strain on families.
“This can lead to delayed or foregone care, negatively impacting the individual's overall well-being and development,” he added, suggesting that the Flexi-Medisave initiative for the elderly be expanded to cover younger PWDs.
Benjamin Lee taking the MRT for lunch with other Down Syndrome Association members as part of their training to be independent. (Photo: CNA/Mak Jia Kee)
Dr Quek also noted that transitioning to a new arrangement after a caregiver's death could be “disruptive and traumatic” for PWDs, and that more focus on respite care and emotional support would be necessary.
Mdm Aun, for her part, just wants to ensure that Mr Lee is well-disciplined and ready to live in society.
“You cannot blame the public for being unkind to him if he misbehaves. And if he doesn’t have good behavioural skills, the stress falls onto the future caregivers,” she said.
Yet no amount of planning can determine how he will react to her inevitable passing.
“I’m petrified and have nightmares of what will happen if I'm not around. Yes, he will have a roof over his head, he'll have three meals on his table, but what about his emotions?" said Mdm Aun.
“He gets upset whenever I broach the subject. We’re joined at the hips. I cannot imagine a life for Ben without me, and I cannot imagine my life without him.
“I only wish to live one second more than Ben. I don’t need more, just one second.”
Mdm Li Shu Yun’s son Allan Cai now says he’s “the happiest man on Earth”, but just like Mdm Aun, she worries if her death will trigger mental health issues for him.
Mr Cai, 26, has Down Syndrome as well, on top of heart and hearing issues.
Li Shu Yun with her son, Allan Cai who was diagnosed with Down Syndrome at birth, at the Down Syndrome Association in Bishan on Nov 21, 2024. (Photo: CNA/Mak Jia Kee)
When he started working as a packer at 18, the journey from their home in Bukit Timah to an industrial area in Woodlands scared 61-year-old Mdm Li.
But she didn’t want him to feel any less capable than his colleagues. Added to that was a boss who told Mdm Li then that the workplace was “not a school or care centre” and that Mr Cai “needs to be independent”.
“After much training and retraining, he could go to work on his own in two weeks,” said Mdm Li. “It was such a big milestone as it gave him the confidence to travel to other places by himself.
“He has a strong desire to be independent and has always shown determination to do things on his own.”
Now, in his second job at social enterprise Mushroom Buddies, Mr Cai wears multiple hats from harvesting mushrooms to taking charge of colleagues’ timesheets.
Li Shu Yun with her son, Allan Cai who was diagnosed with Down Syndrome at birth, at the Down Syndrome Association in Bishan on Nov 21, 2024. (Photo: CNA/Mak Jia Kee)
Asked if she would like Mr Cai to date and perhaps find a girlfriend, Mdm Li hesitated.
"Allan knows he needs to be able to completely take care of himself before he can be in a relationship. He has a long way to go in managing himself, and eventually two people," she said.
"He used to call his female friends his girlfriends, and I had to explain to him the difference ... He's now very careful."
Mdm Li urged the public to include PWDs in areas beyond the workplace, adding how they can often surprise people with their capabilities.
“People are friendlier and the climate in Singapore is really changing and should continue to do so,” she said.
Asst Prof Chen from NUH noted however that not all members of the public, including even professionals in healthcare and social services, have adequate knowledge and understanding in this space.
"Awareness and appreciation of the needs of PWDs ... can be complex," he said. "(It) may mean that PWDs may not be getting the full spectrum of care, services, or accommodations they require."
Ms Phua, the MP, said public awareness campaigns should showcase the skills, talents and capabilities of PWDs.
"Beyond understanding, we need greater acceptance of different ways of thinking, acting, and communicating," she added. "We also need action from the public to remove barriers for participation. These barriers include negative perceptions or attitudes towards PWDs."
The potential of PWDs "needs to be unlocked, whether economic or not", said Ms Phua.
"This is an important group that needs to be included and supported if Singapore were to pride ourselves as a progressive, inclusive and caring society.
"What will it profit a country if it gains the world but loses its soul?"
For Mdm Lim, the mother of Mr Wong who has cerebral palsy, opportunities for her son to interact with the rest of society, and to explore places she would otherwise struggle to take him to, are precious.
He does so with the help of disability charity SPD, which runs a day activity centre that trains his fine motor skills, keeps his mind active and takes him on excursions to gain new experiences.
Ernest Wong leading other members of SPD in morning exercises as part of SPD's outdoor activities on Dec 5, 2024. (Photo: CNA/Mak Jia Kee)
At its headquarters, SPD also teaches book-binding, leather crafting and computer skills, which could help PWDs make a living.
“The skills that each PWD needs to live independently can differ,” said SPD social worker Alvin Tan. “But we most commonly realise that money-handling and community integration are the top traits they need.”
On one SPD outing, Mr Wong and other PWDs were taken to Siloso beach on Sentosa island, where they had breakfast and strolled along the shore before being asked to help sweep up dried leaves at a resort there.
Ernest Wong goes outdoors from time to time, accompanied by social workers from SPD to help him stay connected to the broader community. (Photo: CNA/Mak Jia Kee)
Mr Wong, one of the oldest in the group, was tasked to lead a round of light warm-up exercises to kick off the day.
This time, he opted to go without his wheelchair or walking stick, with an SPD social worker and volunteer holding him on each side as he attempted to tread the sandy beach.
With eyes closed and teeth clenched, it was clear that Mr Wong was in pain and having a difficult time.
But he kept at it, going up and down the beach multiple times, fuelled by sheer determination and a repeated affirmation: “Let’s go!”
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His steps are unbalanced, even with the aid of a walking stick the 42-year-old - diagnosed with cerebral palsy as a toddler - grips tightly.
And every evening, his mother sits at the table, watching his every move with watery eyes – while not lifting a finger to help her son.
“My heart hurts when I see him struggle, but I’m teaching him to be independent,” said his sole caregiver June Lim, her hands trembling from Parkinson’s. “Who’s going to help him if I don’t?”
Mr Wong, who has impaired vision and scoliosis, has lived his life predominantly by the side of his mother, now a 73-year-old retiree.
He still uses a wheelchair when outdoors; at home, he also gets some assistance to move about using 12 grab bars placed along the corridor.
Mdm Lim watching her son, Ernest Wong walking with the help of wall-mounted walkers. (Photo: CNA/Mak Jia Kee)
“I always tell him: ‘I’m teaching you to do things. If not, when I die, who’s going to look after you?’” said Madam Lim.
She wants to buy a small flat for Mr Wong before she dies, but frets about how her savings won’t cover his conservancy charges. He is unemployed.
More worryingly, she isn’t 100 per cent certain her son can live alone.
The mother-son duo have looked into adult disability homes, but to Mdm Lim, nobody will understand or take care of Mr Wong’s needs as well as she does.
“It will be easier if he goes first, so I can take care of him for the rest of his life. But I don’t think that will happen, so I need to start making plans.”
Mdm Lim assisting her son, Ernest Wong, as he sits on a chair. (Photo: CNA/Mak Jia Kee)
Hers is a dilemma faced by many caregivers of people with disabilities (PWDs) - particularly the ageing ones.
Data from the Ministry of Social and Family Development (MSF) showed that one in four such caregivers were above 65 years old, with a median age of 57. Almost 70 per cent of them were female.
"Many caregivers may not have formalised long-term care arrangements for their dependants due to a variety of reasons, and PWDs may face an uncertain future without a proper support network in place," said Assistant Professor Matthew Chen from the geriatric medicine division at the National University Hospital (NUH).
A slew of initiatives is available to help PWDs negotiate eventual independence, spanning government employment, financial and infrastructural support; social and community services; and living arrangements operated by non-profits or private sector organisations.
But gaps remain, including in areas of medical costs, lifelong learning and public awareness, according to caregivers, social service agencies, advocates and experts interviewed by CNA.
In a speech in October last year, Singapore’s Prime Minister Lawrence Wong himself acknowledged that more can be done in this space.
“We are studying how we can give more help to caregivers and persons with disabilities, to enable them to plan for their needs, goals and aspirations, and to update these plans as their life stages and family circumstances change.”
“We are also looking into ways to enhance and extend the range of support to enable persons with disabilities to continue to live independently in the community,” he added.
“We hope this will reduce the emotional and mental strain on caregivers, by assuring them that their loved ones with disabilities can continue to live well in the community, even after they are no longer able to care for them.”
HOME AWAY FROM HOME
For almost 20 years, Mr Cheng Chiang Yong has spent five days a week away from his home. But the bond between the 54-year-old - who has an intellectual and speech disability - and his mother Tan Hum Seow remains as firm as ever.
When the 77-year-old told him she would die one day, he shook his head violently and covered her mouth with his hand.
“He always does that. He hasn’t accepted that this will one day happen,” said Mdm Tan.
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, showing an artwork that he painted, at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
Mr Cheng only started walking at age five, and eating on his own at seven. He was diagnosed at around eight years old.
As it became more difficult to care for him as he grew older, Mdm Tan started looking at options such as the residential training hostel where Mr Cheng now lives most of the time - even though it initially felt like she was “abandoning” him.
But she started relaxing when she observed her son improving and acquiring skills to be independent, while experiencing communal living at the Ubi Hostel run by TOUCH Community Services.
Mr Cheng is now employed by JOURNEY - a brand under TOUCH that represents the creative output of people with intellectual disabilities - where he paints artworks that get sold.
He has saved enough money to give his mother a red packet every Chinese New Year, and even fund her vacations.
“I would never imagine that my child would be able to bring home an income,” Mdm Tan said, beaming with pride.
She urged other caregivers to let go of any reluctance to adopt a hands-off approach. “Let your child have a purpose to do and learn something, so they can earn a living out of it.”
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, hanging a calendar at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
At the Ubi Hostel, residents must hold jobs, clean their own space, buy their own food and travel by themselves.
They are also taught financial tips on how to save money, before going home over the weekend to spend time with their families.
“Life will be even more challenging if we protect them too much,” said TOUCH’s head of caregivers support group June Sim.
She stressed that the hostel was not an end destination for PWDs, with the goal being integration back into their own homes and communities.
“It is important to increase awareness to show how capable persons with disabilities can be, and help them play an integral part in the wider community.”
Mdm Tan Hum Seow and her son, Mr Cheng Chiang Yong, at the TOUCH Ubi Hostel on Jan 3, 2025. (Photo: CNA/Wallace Woon)
This is a key focus of both disability agency SG Enable as well as the Enabling Masterplan 2030, a national roadmap for the government and community to work together to support PWDs.
“We’re a nation that has made good progress in disability inclusion over the years, and we will continue to strengthen our ecosystem of support to provide persons with disabilities the access to achieve their potential, and participate as integral members of society,” said SG Enable’s CEO Lee May Gee.
Through three enabling services hubs across Singapore - with more to come in the next five years - her agency hopes to bring community support closer to the homes of PWDs and their caregivers.
“As these hubs become more known by the community, it will create more opportunities for everyone of all abilities to connect, engage and participate in activities together,” Ms Lee added.
In September, SG Enable and MSF also announced a pilot Enabled Living Programme running from this year to 2028. It will involve up to 250 low-income PWDs with low to moderate support needs staying in a cluster of public rental flats, and receiving support from an on-site service provider.
“Enabling PWDs to live independently is essential for their empowerment, dignity and meaningful contribution to society,” an MSF spokesperson told CNA.
“The government is committed to provide a range of solutions to enable PwDs to age in place or access suitable living arrangements.”
For PWDs with up to high support needs, an adult disability home may be a better fit, social service agencies told CNA.
The THK Home for Disabled @ Sembawang, run by Thye Hua Kwan Moral Charities, is the residence of about 160 PWDs with either ageing caregivers or unfavourable living environments in their own households.
An adult disability home is not a nursing home, however, and residents are not solely confined to four walls either.
Though they still get some assistance in daily living, they are also brought out for various activities such as walks, picnics and trips to the zoo; and also trained to be independent, said Ms Chloe Lee, Superintendent at THK Home for Disabled @ Sembawang.
“It’s like a community where the residents find strength in one another and the staff are like parents.”
Experts CNA spoke to however pointed out that adult disability hostels, homes and other living arrangements can be limited in capacity, with long waiting lists to boot.
Services for adult PWDs, including residential models, "are still scarce, not scaled (and) not well-coordinated and communicated", said Member of Parliament Denise Phua, who sits on the Government Parliamentary Committee for Social and Family Development.
JOURNEY TO INDEPENDENCE
At the Down Syndrome Association, an adult enhancement programme places emphasis on independence.
Students are trained on fine motor skills to help with employment, and taught how to control their emotions and communicate effectively with peers.
“We teach our learners functional life skills, how to live independently in the community, in their homes, as well as employment skills to get jobs,” said Evelyn Lai, executive director of Down Syndrome Association.
Members of Down Syndrome Association attend training classes to help develop important life skills that support their independence and overall well-being. (Photo: CNA/Mak Jia Kee)
“People with Down Syndrome face regression issues where they lose their abilities quickly. So there is a need to train them to be independent through cognitive life skills.”
During the programme, students also simulate workplace settings and learn how to purchase groceries at the supermarket.
“It’s very hard for people with Down Syndrome to manage money and this repeated practice is very important for them to maintain their independence,” Ms Lai added.
Ms Phua, who's also president of the Autism Resource Centre, similarly stressed the importance of continuing to equip PWDs with practical independent living skills, from their schooling years and into adulthood.
Retiree Regina Aun’s son Benjamin Lee, 36, has been enrolled in the Down Syndrome Association's programme for 18 years. She sees it as a way of “opening up his world”, and for a semblance of what life would be like on his own.
When she first found out that he had Down's, Mdm Aun was “completely devastated” by the prospect of the challenges ahead for him – but quickly came to her senses to start thinking about his future.
Regina Aun and her son, Benjamin Lee, at the Down Syndrome Association in Bishan on Dec 12, 2024. (Photo: CNA/Mak Jia Kee)
“I wasn’t very financially well-off, I started planning for him since he was a baby so there would be enough funds if he goes to an adult disability home,” said the 66-year-old.
She also called for more medical subsidies, citing how Mr Lee has already shown signs of failing eyesight, joint pains and dementia - all conditions typically faced by Down Syndrome patients.
Dr Sean Quek, a family medicine physician who’s worked with PWDs, said the cumulative costs of treatments - coupled with the need for assistive devices, specialised education and early intervention programmes - can place a "tremendous" financial strain on families.
“This can lead to delayed or foregone care, negatively impacting the individual's overall well-being and development,” he added, suggesting that the Flexi-Medisave initiative for the elderly be expanded to cover younger PWDs.
Benjamin Lee taking the MRT for lunch with other Down Syndrome Association members as part of their training to be independent. (Photo: CNA/Mak Jia Kee)
Dr Quek also noted that transitioning to a new arrangement after a caregiver's death could be “disruptive and traumatic” for PWDs, and that more focus on respite care and emotional support would be necessary.
Mdm Aun, for her part, just wants to ensure that Mr Lee is well-disciplined and ready to live in society.
“You cannot blame the public for being unkind to him if he misbehaves. And if he doesn’t have good behavioural skills, the stress falls onto the future caregivers,” she said.
Yet no amount of planning can determine how he will react to her inevitable passing.
“I’m petrified and have nightmares of what will happen if I'm not around. Yes, he will have a roof over his head, he'll have three meals on his table, but what about his emotions?" said Mdm Aun.
“He gets upset whenever I broach the subject. We’re joined at the hips. I cannot imagine a life for Ben without me, and I cannot imagine my life without him.
“I only wish to live one second more than Ben. I don’t need more, just one second.”
INCLUSION THE KEY
Mdm Li Shu Yun’s son Allan Cai now says he’s “the happiest man on Earth”, but just like Mdm Aun, she worries if her death will trigger mental health issues for him.
Mr Cai, 26, has Down Syndrome as well, on top of heart and hearing issues.
Li Shu Yun with her son, Allan Cai who was diagnosed with Down Syndrome at birth, at the Down Syndrome Association in Bishan on Nov 21, 2024. (Photo: CNA/Mak Jia Kee)
When he started working as a packer at 18, the journey from their home in Bukit Timah to an industrial area in Woodlands scared 61-year-old Mdm Li.
But she didn’t want him to feel any less capable than his colleagues. Added to that was a boss who told Mdm Li then that the workplace was “not a school or care centre” and that Mr Cai “needs to be independent”.
“After much training and retraining, he could go to work on his own in two weeks,” said Mdm Li. “It was such a big milestone as it gave him the confidence to travel to other places by himself.
“He has a strong desire to be independent and has always shown determination to do things on his own.”
Now, in his second job at social enterprise Mushroom Buddies, Mr Cai wears multiple hats from harvesting mushrooms to taking charge of colleagues’ timesheets.
Li Shu Yun with her son, Allan Cai who was diagnosed with Down Syndrome at birth, at the Down Syndrome Association in Bishan on Nov 21, 2024. (Photo: CNA/Mak Jia Kee)
Asked if she would like Mr Cai to date and perhaps find a girlfriend, Mdm Li hesitated.
"Allan knows he needs to be able to completely take care of himself before he can be in a relationship. He has a long way to go in managing himself, and eventually two people," she said.
"He used to call his female friends his girlfriends, and I had to explain to him the difference ... He's now very careful."
Mdm Li urged the public to include PWDs in areas beyond the workplace, adding how they can often surprise people with their capabilities.
“People are friendlier and the climate in Singapore is really changing and should continue to do so,” she said.
Asst Prof Chen from NUH noted however that not all members of the public, including even professionals in healthcare and social services, have adequate knowledge and understanding in this space.
"Awareness and appreciation of the needs of PWDs ... can be complex," he said. "(It) may mean that PWDs may not be getting the full spectrum of care, services, or accommodations they require."
Ms Phua, the MP, said public awareness campaigns should showcase the skills, talents and capabilities of PWDs.
"Beyond understanding, we need greater acceptance of different ways of thinking, acting, and communicating," she added. "We also need action from the public to remove barriers for participation. These barriers include negative perceptions or attitudes towards PWDs."
The potential of PWDs "needs to be unlocked, whether economic or not", said Ms Phua.
"This is an important group that needs to be included and supported if Singapore were to pride ourselves as a progressive, inclusive and caring society.
"What will it profit a country if it gains the world but loses its soul?"
Related:
For Mdm Lim, the mother of Mr Wong who has cerebral palsy, opportunities for her son to interact with the rest of society, and to explore places she would otherwise struggle to take him to, are precious.
He does so with the help of disability charity SPD, which runs a day activity centre that trains his fine motor skills, keeps his mind active and takes him on excursions to gain new experiences.
Ernest Wong leading other members of SPD in morning exercises as part of SPD's outdoor activities on Dec 5, 2024. (Photo: CNA/Mak Jia Kee)
At its headquarters, SPD also teaches book-binding, leather crafting and computer skills, which could help PWDs make a living.
“The skills that each PWD needs to live independently can differ,” said SPD social worker Alvin Tan. “But we most commonly realise that money-handling and community integration are the top traits they need.”
On one SPD outing, Mr Wong and other PWDs were taken to Siloso beach on Sentosa island, where they had breakfast and strolled along the shore before being asked to help sweep up dried leaves at a resort there.
Ernest Wong goes outdoors from time to time, accompanied by social workers from SPD to help him stay connected to the broader community. (Photo: CNA/Mak Jia Kee)
Mr Wong, one of the oldest in the group, was tasked to lead a round of light warm-up exercises to kick off the day.
This time, he opted to go without his wheelchair or walking stick, with an SPD social worker and volunteer holding him on each side as he attempted to tread the sandy beach.
With eyes closed and teeth clenched, it was clear that Mr Wong was in pain and having a difficult time.
But he kept at it, going up and down the beach multiple times, fuelled by sheer determination and a repeated affirmation: “Let’s go!”
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