The Struggles and Hard Choices of Hong Kong's Aging Mentally Challenged Population
With few places to turn, the families of the city's mentally challenged people often have to turn to facilities that are overcrowded and underfunded.
Hong Kong's Lok Sam House is a government-funded medical hostel for the intellectually disabled, one of only a handful of facilities in the city of more than 7 million dedicated to that purpose. Located in the suburban district of Sha Tin, Lok Sam is tucked away in the leafy, quiet Lung Hang public housing estate. Inside, residents sleep eight to a room, the overcrowding a result of a system that is struggling under the weight of a problem it's ill-equipped to deal with. More than half of Lok Sam residents are now over 50, well past the age when the government thought they would have passed away. These people will stay at the ramshackle hostel until they die—and those are the ones lucky enough to get a bed.
The building is unchanged since the 1970s, creating some problems for the patients' caretakers. The wings are separated by outside space, and social workers at Lok Sam say that because of this, patients require constant supervision when they're moving from wing to wing, and often escape. The old doors at the hostel have trouble staying shut and locked, most of the furniture hasn't been replaced for decades, and the entrances to the bathrooms are too narrow for modern wheelchairs.
Candy Shum Mui-fong is the chief officer of service for Hong Kong's Mental Health Association, an NGO that runs the Lok Sam House. She told VICE that the problem is that the government's Social Welfare Department, which provides most of the facility's funding, has failed to adjust its policies to keep up with the times.
According to Shum, when the government last reviewed healthcare policies for those in Hong Kong with intellectual disabilities, more than 20 years ago, it was with the expectation these people would die at around 40 years old. But now, because of advancements in medical care, that same population is living up to 60 and older.
When VICE reached out to the government for a comment on how it plans to accommodate this growing population, a spokesperson said that a report had been written. "In 2014, a working group under the Rehabilitation Advisory Committee commissioned the Hong Kong Polytechnic University to conduct a survey study on aging of persons with intellectual disabilities as well as the enhancement measures to be implemented," said the Labor and Welfare Bureau's principal information officer. Shum has been pushing the government to adopt reforms in her capacity as the head of the city's working group for this population, organized by the Hong Kong Council of Social Service, a federation of local welfare agencies that contributed to the report.
Over the past few years, the Social Welfare Department has increased its funding for manpower and purchasing rehabilitation equipment. Last year, the government injected nearly $21 million into the care of those with intellectual disabilities. Yet some say more fundamental changes are needed.
"In the past ten to 15 years, there hasn't been any review of the policy for those with intellectual disabilities, but these people are getting old," Shum said. "We need a new policy for these people, especially when a large number of them are getting old. How do we serve them?"
According to Alice Fu Lau Shuk-yee, an assistant director at the Mental Health Association, the government expected most residents to die by now. But they haven't, and even though the waiting list to get a spot in Lok Sam is 12 or 13 years long—that's when the next inpatient will die, freeing up a space—there are no plans to build other facilities where the intellectually disabled can live.
"If these people were in a hospital, they'd just be restrained," Fu said. "They can't communicate and nurses don't know what do with them."
At another hostel in busy Kowloon, where some patients with intellectual disabilities are lucky enough to get a bed, the picture is brighter, but far from perfect. The facilities are modern and have been recently renovated, and it's more spacious than Lok Sam. But with 50 inpatients living inside just over 6,000 square feet, it's still crowded—and, as with every other facility, there's a long waiting list.
The government plans to add 436 beds for inpatients to address increasing demand. Right now, there are 2,248 people in Hong Kong with severe intellectual disabilities who are waiting for a bed in a public medical hostel. Each must be assessed by the Social Welfare Department—part of a slow-moving process called the Central Referring System for Rehabilitation Services. "There is a priority list for cases with very urgent and genuine needs," said Fu. "But of course these priority cases still have a waiting period."
Though Lok Sam may seem drab, it's better in many ways for those with a severe intellectual disability than Hong Kong's public hospital system. "If these people were in a hospital, they'd just be restrained," Fu said. "They can't communicate, and nurses don't know what do with them."
Even taking patients from Lok Sam to receive offsite medical care presents challenges. "We have more than 40 patients with special needs, and there are two to four specialists who can accommodate for those needs," said Shum. "They have to be escorted to the clinic, but we can't spare the manpower—so we have to arrange for private caretakers, which are paid for by the patients." In Hong Kong, clinics—both public and private—have notoriously high waiting times because of medical-staff shortages. "But it's even harder for those with intellectual disabilities," Shum said. "When we take them out and have them wait for hours, maybe up to five, for the doctor, they have outbursts."
Shum and Fu have been looking for spaces for new facilities, but their efforts have been stymied by competition from other projects funded by the Social Welfare Department. They say it's relatively easy for the government to turn a space into a home for elderly care—it's something that's more widely accepted by the city's communities. But with "spaces for the mentally ill or intellectually disabled, no, no, no," Shum said. "It's down on the list with ex-offenders and rehab."
Wong Yuet-kwan, whose younger brother Kam-tsuen has been resident at Lok Sam House for 32 years, is just now beginning to think about the possibility of his death. "At the time we brought Kam-tsuen here, no, I didn't know that he'd be here forever," Yuet-kwan said. "I've accepted that it's the truth he'll die here, and yes, it's difficult to face it."
Kam-tsuen, now 57, was diagnosed in the 1970s with a moderate intellectual disability. At the time, he lived with his brother on a boat in Hong Kong's Aberdeen harbor, where the two were fishermen. Yuet-kwan was scared for his brother as he deteriorated; he once fell overboard and nearly drowned.
When Yuet-kwan heard that Lok Sam had just opened, he applied to get his younger brother a bed—but Kam-tsuen was placed on a decade-long waiting list. At the time, the competition for beds was nearly as competitive as it is now because the Lok Sam House was the only facility of its kind in Hong Kong.
"There's been no change here since when I first brought Kam-tsuen to Lok Sam House in 1983," Yuet-kwan said. "The government should offer more resources, including manpower, and improve these facilities—Lok Sam House is too crowded. I want the government to build more of these facilities, so there's no need for the intellectually disabled to wait so long—and I want the government to train more people to take care of them, because there aren't enough social workers and therapists."
When I met Kam-tsuen, he was in a wheelchair and had difficulty keeping his head upright. While he was mostly unaware of his surroundings, he seemed to recognize his brother, who wheeled him through the center.
Still, Yuet-kwan seemed grateful for the Lok Sam House and its dedicated staff. "Even if I had money, I'd choose this place for Kam-tsuen," he said. "I have more confidence in the Hong Kong government than the private sector." (We met just days after an autistic boy jumped out of a window to his death at a private facility for the intellectually disabled.)
For Yuet-kwan and many others, the Lok Sam House—in support-starved Hong Kong—is the best home they can find for their loved ones, despite its flaws.
"We don't want parents killing their intellectually disabled kids and then committing suicide, which has happened before," said Fu. "We feel that it's better the patients stay here until they pass away."