The plight of caregivers of disabled children

SINGAPORE - They are both in need of care themselves with a myriad of health and financial issues.

But Mr Richard Lye, 82, and Mr Zakaria Abdul, 77, say they don't have the luxury of looking after themselves. Even death, they say, is not an option.

Both are looking after children who are mentally challenged. Mr Lye has three adult children who are mentally unfit, while Mr Zakaria has five children with Down syndrome.

They worry that their children will be forced to fend for themselves when they die.

Yet they are not eager to accept help as they say it's their responsibility to look after their children.

Should social welfare agencies intervene anyway and take over the responsibility of looking after these children?

Mrs Florence Lim, director of MWS Covenant Family Service Centre, thinks so.

She said that sometimes, the Community Development Councils or the grassroots will wait until something happens - like when the elderly parent dies.

"The first step they would take is to trace (the deceased's) relatives and other adult children to ask if they could help look after their disabled or intellectually-challenged relatives. "If all else fails, it's back to the state," she said.

However, some families may not welcome state intervention, social workers told The New Paper, a point made by political leaders too.

"Even if we extend our helping hands to them, they just do not want to accept. What good does that do?" said a social worker from a family service centre in Yishun.

Minister of State of the Ministry of Social and Family Development Halimah Yacob said last November in Parliament that Singaporeans who do not want to seek public assistance should have their wishes respected.

"We need to respect the desires of people - even though they may be in the bottom 20 per cent - to have ownership of their lives," she said.

Madam Halimah was replying to Ms Irene Ng of Tampines GRC, who had asked what could be done for people who refuse public welfare.

Culturally uncomfortable

Another reason why some people reject help is because Asians are culturally uncomfortable talking about death, Mrs Lim said. "They don't see the need for future planning and get very mad when you raise the topic," said Mrs Lim, who has 25 years of social work experience.

Another reason is that these parents are overly protective of their children. Elaborated Mrs Lim: "When you suggest help to them, they fear that you're going to separate them and their children."

Indeed, former Nominated MP Paulin Straughan, a sociologist who specialises in family and ageing issues, said housing the elderly parent-caregiver and the adult children in separate homes is not providing help to either.

She explained: "When you give help, you cannot do it on your own terms. It has to be a conversation with the family - what would they want or like? If they want to age in place, would they like their meals delivered and healthcare taken care of?

"And then you can ask them how they would like us to look after their children when they're gone."

But Care Corner Family Service Centre's (Toa Payoh) centre manager Frances Lee said that if the disabled or mentally-challenged children can cook, take public transport and look after themselves, there is no need for welfare agencies to intervene.

Intervention should be based on a case-by case-basis, added Lakeside Family Centre's casework and counselling services director Edwin Quek.

Agencies should refer elderly parent-caregivers to the Mental Capacity Act, which covers their children when they die, he said.

Said Mr Quek: "I do not understand what their apprehension (of not wanting to sign the Act) is about as it covers all of their concerns.

"If they have no relatives to take them in, I believe there are destitute homes. So in a sense, the state has already helped."

The Mental Capacity Act allows parents to go to court and appoint themselves as deputies to act and decide on behalf of their children, or appoint "successor deputies" to take over their role when they die, a Ministry of Social and Family Development spokesman told TNP.

Additionally, they can also set up trust funds with the Special Needs Trust Company (SNTC) to ensure that the financial needs of their children are taken care of, the spokesman added.

SNTC is the only non-profit trust company in Singapore set up to provide trust services for the benefit of persons with special needs.

However, the take-up rate by families is not as high for several reasons, one of which is unfamiliarity and an "inertia to action", said MP for Moulmein-Kallang GRC Denise Phua.

"The schemes need to be further finetuned to address the obstacles such as need for better hand-holding, cost of entry and complexities such as need for appointments of deputies," she said. The problem with this economic model is that it puts the burden on the individual to look after themselves and their dependants, Associate Professor Straughan asserted.

"It keeps the tax rate low, but it comes at a tremendous cost to families and strains family relationships," she said.

"And it also presumes that parents save enough, she added. 'Not a social enterprise'

Said Associate Professor Straughan: "Even if (the elderly parents) wanted to buy insurance, the insurance company might not want to cover them. The business of insurance is not a social enterprise.''

Instead, Prof Straughan suggests a national healthcare coverage for Singaporeans above 65 that will help cover their healthcare or their dependents' whether they are in good health or not.

She said: "I'm prepared to pay 1 per cent more in taxes if it will go towards this collective health coverage.

"We've got to move past seeing people as greedy and out to exploit the system. Sure, there will be cheats, but most Singaporeans are decent."

Still, there is room to improve the system, Ms Phua maintained.

For instance, the state and its relevant agencies need to "intervene earlier and more for the at-risk families who will definitely need help, such as very low-income families", and for families with special-needs parents with special-needs children, said Ms Phua.

Get The New Paper for more stories.