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Monday, Nov 30, 2020

Coronavirus: Hongkongers caring for special needs individuals at ‘breaking point’ as vital services are scaled back

Survey shows respondents, many in lower-income brackets, dealing with lack of sleep, shortened tempers and depression as pressure mounts at home. Lawmaker calls on government to green light allowance for those caring for relatives at home along with new funds for treatment and training services

Nine out of 10 Hongkongers caring for family members with special needs have felt increasingly helpless amid the coronavirus epidemic, a new survey calling for government financial support shows.

The city’s attempts to contain the highly infectious disease has led to the closure of its kindergartens, primary and secondary schools until April 20 at the earliest, while the Social Welfare Department and some NGOs have cut back their services to reduce infection risks.

That has resulted in mounting pressure on the residents who desperately rely on those services.

The survey, initiated by Labour Party lawmaker Fernando Cheung Chiu-hung and released at a press conference on Saturday, polled 1,400 respondents between February 27 and March 4, with 90 per cent of those surveyed women and 72 per cent acting as full-time carers.

“The situation of carers is dire,” Cheung said. “As schools have closed and services have been cut back, the responsibility of taking care of those with special needs has shifted to carers, who have reached the breaking point.

“Facing the epidemic, the frustration and helplessness of carers has been neglected,” he said.

The coronavirus has killed more than 3,400 people and infected more than 101,000 worldwide, mostly in mainland China. Hong Kong has recorded more than 100 cases, two of whom have died.

According to the survey, 73 per cent of respondents were caring for children – many of whom struggled with autism, attention deficit hyperactivity disorder (ADHD) or intellectual disabilities – while more than 20 per cent were attending to spouses or elderly parents.

Facing a lack of hygiene products and fearing infection, those with special needs and the people caring for them are often trapped at home. The survey found 42 per cent went out only once or twice a week, while 40 per cent did not go out at all.

Tsin Yin-kwan, 68, has been taking care of her 74-year-old husband, Wong Shun-lau, who has suffered from Parkinson's disease for more than 10 years, ever since the residential home where he lived closed over the Lunar New Year holiday because of epidemic fears.

Tsin said her husband could fall down easily while walking, meaning she had to keep her eye on him at all times. While she used to attend social activities in her community, attending to her husband, she said, was now a full-time job.

“I have to follow him wherever he goes, even to the bathroom,” she said. “I feel great pressure, both physically and mentally.”

For those taking care of children with special educational needs (SEN), a category covering a range of developmental problems from learning difficulties and autism to physical disabilities and mental illness, the closure of schools and suspension of day care centres and rehabilitation services has caused their conditions to worsen.

The survey found more than 70 per cent of those polled said the people they cared for showed emotional or behavioural problems amid the epidemic, with 16 per cent calling those problems serious.

Single mother Carrie Ng Gui-di, 50, has been staying at home, taking care of her 12-year-old daughter, who was diagnosed with ADHD three years ago. She said her daughter at first felt excited about the suspension of classes, but as time went by, the long hours at home made her restless, leading her to occasionally start screaming.

“She would keep asking me ‘Mum, when can I go back to school? When can I have my previous life back?’” Ng said. “I’m so worried seeing her condition worsen.”

Her own life dramatically disrupted, Ng said she felt like she had no place to vent her feelings of helplessness.

“I have to take care of my daughter who is hyperactive all day long. For now, I only want to take a break and have a good night’s sleep,” she said.

Lack of sleep was a common theme among survey respondents, with 74 saying it had become an issue. More than 50 per cent, meanwhile, said they were losing their tempers more easily, while more than half said they were dealing with depression – serious depression in the case of 15 per cent.

Another 51 per cent said they were experiencing physical pain.

Meanwhile, while the city’s battle with the coronavirus has seen services cut back, home carers are also dealing with the reality of an economic downturn that has left many jobless or with their hours slashed.

Most of the survey’s respondents came from lower-income households, with 66 per cent having a monthly household income HK$25,000 or less, and 40 per cent bringing home no more than HK$15,000 a month, the survey showed.

Given the challenges they now face, lawmaker Cheung called on the government to provide allowances for those caring for family members, as well as new funds for treatment and training for those with special needs.

He also urged the Social Welfare Department and the Education Bureau to provide masks and other protective items for affected families, and called on schools and social service units to connect with and support them through the internet.

Cheung said essential services catering to their needs – including house cleaning, grocery shopping and bathing – should be reinforced during the epidemic, instead of being cut back.

“You simply can’t leave an elderly person at home without a shower for two months,” he said.

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