Three in four Hong Kong carers suffer significant stress while looking after youngsters with conditions such as autism, a survey has found, with long hours and inadequate support among the complaints.
The autism-focused To Dream Charity Foundation on Sunday released the results of its poll of 220 carers conducted in April, shining a light on their daily pressures.
One of those who spoke to the foundation was Joan Moy, the primary carer for her 12-year-old autistic grandson.
“Daily care makes me feel tied down and affects my social life with friends,” Moy said at a press conference. “For the past three years, I have had to take care of him for 24 hours a day.”
The boy has multiple disabilities including a speech disorder and sensory sensitivities.
Nearly 80 per cent of the carers surveyed were women, while about 60 per cent were aged between 36 and 55.
The poll found that 30 per cent said they provided care for more than 17 hours a day, while about half of the carers rated their current life satisfaction as five or below out of 10.
Significant stress was reported by 75 per cent of respondents.
Moy said such pressures were amplified when she faced “judgmental looks” from others, giving the example of when her grandson became distressed on public transport due to lack of seating.
Carers also expressed worries about the futures of those they were looking after, with more than 60 per cent saying they foresaw “limited employment or future prospects” for the youngsters as a major challenge, along with financial difficulties and emotional distress.
Almost 30 per cent of carers also reported having no plans for when the children left school, saying that they had the primary responsibility for teaching essential self-care and life skills in the absence of structured school support.
Sindy Cat Lee shared her struggles in organising the daily life of her autistic son who had been out of school for five years.
She said she remained worried about her son’s long-term care and lack of social connections, despite his employment and increased independence.
“When he left school, a lot of support that we had disappeared,” she said. “We as parents were very worried because we had to go out and seek help for them, relying on other parents, others with similar experiences, and collect resources for our son so that he can live better.”
According to the survey, more than 80 per cent of care recipients had autism, 70 per cent had intellectual disabilities and almost 90 per cent reported multiple disabilities.
Nearly 80 per cent of those receiving care were male. Nearly 40 per cent of care recipients were 12 years old or younger, the largest group in the survey, followed by the 13 to 18 age group at about 30 per cent.
Foundation chairwoman Macy Chong Po-king called on authorities to do more to help carers, including establishing support centres by repurposing community spaces to offer training and facilitate mutual support.
She also proposed a six-month allowance of no less than HK$3,000 (US$386) a month for all carers to allow them to accompany and guide individuals with special needs in the workplace.
Chong said the initiative aimed to smoothen communication with employers and help residents with disabilities to adapt to new work environments quickly.
The allowance was currently only provided to low-income families, she said.
The foundation also called for a four-year vocational training programme, similar to models used by universities for individuals with special needs, as well as increased community education and engagement to foster understanding and alleviate pressure on carers.
Link: ‘Tied down’: Hong Kong carers of autistic youngsters under high stress, poll finds | SCMP