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More help needed for elderly caregivers of kin with disabilities, say VWOs

SINGAPORE — For years, the sight of 90-year-old widow Madam Lim Chui Tan, trailed by her son, Mr Khoo You Seng — a 53-year-old with a toothy grin and low IQ — was a regular fixture around the estate. Despite her age, Mdm Lim kept their one-room rental flat in Bedok South spick and span, scrubbing his clothes clean, while watching over the partially blind Mr Khoo.

SINGAPORE — For years, the sight of 90-year-old widow Madam Lim Chui Tan, trailed by her son, Mr Khoo You Seng — a 53-year-old with a toothy grin and low IQ — was a regular fixture around the estate. Despite her age, Mdm Lim kept their one-room rental flat in Bedok South spick and span, scrubbing his clothes clean, while watching over the partially blind Mr Khoo.

But with age catching up with her, Mdm Lim is increasingly too tired to bring Mr Khoo out. She depends on staff from the nearby Thye Hua Kwan Moral Charities (THKMC) Bedok Radiance Seniors Activity Centre (SAC) to do so, as Mr Khoo is afraid to take the lift by himself. And despite the help given, Mdm Lim frets over what will happen to her son when she is too weak to care for him.

Mdm Lim’s story is not uncommon among the many elderly caregivers of kin with disabilities, whom they affectionately call their “grown-up children”. As of March, there are some 16,000 persons with disabilities known to SG Enable who are aged 40 and above, including 1,152 persons with intellectual disability, said a Ministry of Social and Family Development spokesman.

It is difficult to ascertain how large the group of elderly caregivers in Singapore is, but VWOs TODAY spoke to highlight the complexity of this perennial issue which has not been receiving enough attention so far, even as the next edition of the Enabling Masterplan for persons with disabilities is being drawn up.

Hovering over the minds of many caregivers is the tough question: “What will happen when I’m gone?”

For nearly three decades, Madam M Syed Halima Beevi, 64, struggled with looking after her cerebral palsy–stricken son, Mr Mohd Hasan Mohammad Ralvan, 34. Her back problems made it difficult for her to nurse him properly — she would lay him on a plastic sheet on the floor for Mr Hasan to relieve himself, and feed him only Milo and water during the day for fear that he would pass too much urine. Helping him shower was a challenge, so his hair often grew matted and sweaty.

Finally, Mdm Halimah’s daughter, who worked in the social service sector, found help from AWWA Personal Care Service (Disability), with the donation of an adjustable bed, adult diapers and physiotherapists who provide therapy and personal hygiene care.

The programme, which started in 2014, has about 36 clients so far, said AWWA Education and Development director J R Karthikeyan.

Mdm Halima was visibly emotional as she spoke of her bedridden son, whom she says is “cheerful and happier” now. She said: “Last time, I felt (hopeless) … I (hope) there’s someone in the community who can take care of him, after I’m gone.”

Others like 85-year-old Molly Lee, said she was initially reluctant to enrol her intellectually disabled son, Sze Min, 54, in such programmes for fear that he was “overaged”. But from being cooped up all day at home, he now eagerly attends the Drop-In Disability programme at THKMC’s SAC in MacPherson.

Under the programme, adults take up in activities like dancing to upbeat tunes and colouring exercises, guided by teachers. As the programme is held in the SAC, the clients can comfortably interact with other seniors, THKMC’s Divisional Director of Elderly Services Ms Sng Yan Ling said. The programme has about 27 clients across four SACs in Singapore.

While VWOs said that Singapore has come a long way in providing for the disabled community, with a range of options available like the community group home and adult disability homes, there is still more to be done for this heavily dependent group.

Pointing out that there should be more community integration, Mr Kartikeyan said: “Instead of (sending) them to institutes like adult homes and daycares which can get full, we can continue to support them physically and emotionally through (home-based care), so they can continue to live in their own homes, with their families.”

Ms Sng noted how empathy from the public can waver when it comes to adults: “People are less forgiving when you bring an (intellectually disabled) adult who misbehaves versus a five-year-old who acts out ... they look at you differently.” She also said that agencies often have to rely on informal referrals and dedicated volunteers to pound the streets on home visits to seek such needy families out.

Special Needs Trust Company (SNTC), a trust management service that has received government funding, has been conducting more Mandarin talks on its trust scheme. Since 2014, it has seen an 11 per cent increase in the number of elderly caregivers aged 65 years and above who set up an SNTC trust. And given the sensitive nature of the topic, some elderly are reluctant to receive help from outsiders.

“They are often closed up because they feel it is their responsibility no matter how hard the situation,” said a Lions Befrienders volunteer, who declined to be named.

Ms Sng added: “A lot of attention has been given to the disabled population, but less so for (such parents) with disabled adult children because of the notion that they can’t be helped.”

Jalan Besar MP Denise Phua, who has long advocated for the special needs group, said more effort should go into looking into this “niche area”, as it is an “urgent social issue that calls for a focused and collaborative action plan”.

This would mean providing regular user-friendly information for those who are unaware of where to go for help, and crowdsourcing and developing more innovative solutions to better serve such a group.

Calling for an integrated agency that can study the landscape of elderly caregivers and get various stakeholders to come on board, Ms Phua said: “For complex and costly gaps such as elderly caregivers and their moderately to severely disabled children, it truly will take a village.”

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