‘I want to live in a nursing home with my kids’: Elderly mum of four adults with special needs

There are about 90 elderly caregivers caring for their adult children with special needs. Many of them worry their children will be forced to fend for themselves after the parents die.

Madam Ng Gim (centre) is a mother and sole caregiver to her four adult children with intellectual disabilities: (from left) Lee Eng Ang, Lee Bee Lan, Lee Peng Peng and Lee Eng Chwee. ST PHOTO: CHONG JUN LIANG

SINGAPORE - Every day, Madam Ng Gim is reminded that her four adult children have special needs, sometimes through unwelcome chatter when strangers stare.

Madam Ng’s sons Lee Eng Ang, 56, and Lee Eng Chwee, 50, and daughters Lee Bee Lan, 54, and Lee Peng Peng, 52, were born with intellectual disabilities.

The 77-year-old, who is unclear about her own health needs, has been their only caregiver since her husband died in 2019 from pneumonia.

In truth, she has been their only caregiver for most of their lives. A deliveryman for a soft drink company, her husband Lee Cheng Zhi was often out for work.

He also had a habit of racking up gambling debts, and she had to help clear them, she said. So she did odd jobs, and then rushed home to look after her children.

She knew her children were special when they were young. They were not able to express themselves verbally, and either did not attend school, or dropped out after they were deemed unsuited for mainstream education.

Madam Ng knew they had to be protected even from relatives, who sought to remind her they were children with special needs.

One family member used to help look after the children when they were younger, but the woman would often lock them in a room for hours.

Madam Ng said she would return to find they had soiled themselves. When asked if she has any happy memories, she shrugged her shoulders and offered a firm “no”.

“They (her children) are like that, I have no choice,” she told The Sunday Times in Mandarin.

When asked about her plans for the future, she said: “If I can’t talk or walk in the future, I plan to go to a nursing home. And if possible, I hope my kids can join me.”

If that is not possible, she hopes they can at least join an activity centre near her, so they can visit regularly.

Elderly caregivers

The Movement for the Intellectually Disabled of Singapore (Minds), which serves people with intellectual disabilities and their caregivers and families, has about 90 caregivers aged 65 and above who are caring for their adult children with special needs.

Madam Ng is one of them.

Madam Ng Gim has been the only caregiver to her four children since her husband died in 2019 from pneumonia. ST PHOTO: CHONG JUN LIANG

In November, Minds facilitated an interview at the Woodlands Employment Development Centre (WEDC), in Woodlands Ring Road.

Throughout the one-hour chat with Madam Ng, her four children never left her side.

They listened attentively to their “mama” and would turn to look at her when she uttered their names.

They also broke into excited chatter when she brought up old stories, like their time in a Sembawang kampung.

It was tough looking after the children on her own.

“When I came home (from work), I didn’t have time to sleep. I would clean their rooms and help them wash up, and cook for them,” said Madam Ng, who now lives in Yishun.

Some years back, she sought help from her Member of Parliament, who referred her children to Minds’ Towner Gardens School.

The school, started in 1983, provides children with intellectual disabilities with an education, including in functional literacy, numeracy and IT skills.

The siblings graduated in the 1980s and 90s, and were placed in vocational training programmes.

Mr Lee Eng Ang and his sister, Ms Lee Bee Lan, now work around six hours, from Monday to Friday, at WEDC, where they pack coffee sachets and dental kits.

WEDC offers employment development programmes for people with special needs, which includes training them in vocational skills. The centre also collaborated with businesses to provide jobs within the WEDC.

People with special needs can also be given specialised on-the-job training to prepare them for open employment beyond the centre.

Ms Lee Peng Peng currently works for a laundry and dry-cleaning service provider in Woodlands, while Mr Lee Eng Chwee helps pack carrots at a supermarket warehouse. Minds helped secure the jobs.

Madam Ng, who retired from her job as a caretaker in a secondary school in August 2022, now spends her days at home waiting and cooking for her children. They get home by 5pm every day.

Although all of them are able to shower, eat and work, WEDC social worker Sharifah Shakeela said it is not easy to care for adults with special needs.

As her children are getting older, it is physically demanding for Madam Ng to accompany them for their regular medical check-ups, she added.

“Having to manage the health and administrative matters might also be taxing for Madam Ng, who may be limited in her language and digitalisation (skills),” said Ms Sharifah.

She helps Madam Ng make appointments online, and explains letters the older woman receives from the authorities.

“She’s a very resilient caregiver. She’s very resourceful – she knows where to get help from,” said Ms Sharifah.

Charged in court

Madam Ng frets the most over Mr Lee Eng Ang. In May 2023, he was charged in court with theft and possessing items that were reasonably suspected of being stolen.

He had previously served one week in jail for theft.

Pro-bono lawyer Josephus Tan from Invictus Law argued for the recent case to be thrown out on the basis that Mr Lee Eng Ang was unfit to enter a plea.

He was eventually granted a discharge amounting to acquittal.

Mr Tan said Madam Ng accompanied her son to court every time his case was mentioned, which was about once or twice a month, and every trip was painful for her.

“When I first saw them in court, she was teary-eyed... she was worried that her son would go to prison again. She said: ‘He can’t even control his bowels, he would be bullied inside. Who would take care of him?’” said Mr Tan.

The Community Justice Centre (CJC), a charity organisation providing support for court users who are not represented by a lawyer, told ST that Madam Ng was unsuccessful in obtaining public legal aid for her son as they live in a four-room Housing Board flat.

The Community Justice Centre team, including executive director Dr Leonard Lee (right), has met with Madam Ng Gim and her four children a few times to check on their well-being. PHOTO: COMMUNITY JUSTICE CENTRE

The Public Defender’s Office, which provides criminal defence aid for Singaporeans and permanent residents, conducts a means and merits test before assigning its public defenders to a case.

To qualify for aid, applicants’ average monthly per capita household income must be $1,500 and below, and their property’s annual value cannot exceed $13,000.

Those above 60 years old must not have savings and investments exceeding $40,000.

The case was referred to the CJC, which contacted Mr Tan, and provided one-time financial aid to Madam Ng in the form of grocery vouchers.

Mr Tan said there is a need for a disability registry for criminal cases in Singapore, so individuals with intellectual disability can be diverted from the system instead of being prosecuted.

He acknowledged that some parents of children with special needs would be concerned that such a registry might lead to discrimination.

But he added: “I think (intellectual disability) is more well accepted now, and we can do more for them. There is a higher level of awareness of people with such situations in our community.”

Ms Madeline Ho, a senior training officer at WEDC, who has been assisting Madam Ng’s family for eight years, said that besides vocational skills, the Lee siblings are taught social skills.

“They have their individual uniqueness, yet are very close-knit. The siblings know what is happening in one another’s lives and are very aware of each other,” said Ms Ho.

Separately, the Special Needs Trust Company, a non-profit organisation, has created a plan for their long-term care needs, which includes managing the family’s assets.

The plan ensures that when Madam Ng is no longer around, her children will still receive authorised expenses for their healthcare treatment and daily expenditure.

Madam Ng currently receives free groceries monthly from local charity Food from the Heart.

Minds said it cannot disclose whether she is receiving any other financial aid due to confidentiality.

More help

A total of 29 recommendations were made in the Enabling Masterplan 2030 to support people with disabilities and enable them to contribute to society.

Aside from increasing the employment rate of people with disabilities, a new task force will work on enabling people with disabilities to live in the community as independently as possible.

This will include designing housing and caregiving options ranging from concierge-type assistance for independent residents – where care managers coordinate services such as cleaning for residents – to community managers who organise activities for them.

A spokesman for the Ministry of Social and Family Development said that from March 2023, the Home Caregiving Grant for people with disabilities and their caregivers was increased – from $200 a month to up to $400 a month.

Changes in policies have seen more people with disabilities employed, with employers of such individuals receiving wage offsets with the Enabling Employment Credit.

Between 2021 and 2022, 31.4 per cent of residents with disabilities aged 15 to 64 were employed, compared with 28.2 per cent between 2018 and 2019.

Madam Ng said she is happy that her children now have skills and jobs. She hopes that with some help, they will be able to live independently long after she is gone.

Yes, she is often reminded her children have special needs.

As the family posed for photos, she broke into a rare smile as her children gathered by her side and called out to their “mama”.

To Madam Ng, her four children are just special.

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