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Choo Kyeong-jin lived with hundreds of other people with disabilities in a long-term care center for 15 years and now advocates for deinstitutionalization.

Choo Kyeong-jin remembers the night when his wife abandoned him in his wheelchair outside the entrance of a home for people with disabilities.

He was paralyzed from below his neck after crashing his motorbike on his way to work at a restaurant in Seoul in 1997.

Following that accident, his marriage was strained. He recalls telling his wife in frustration to “just put me in a home.”

“I didn’t really mean it,” he says. “I never thought she’d actually do it.”

He did not hear from her or see his two young children for the next five years. The couple later divorced.

After moving from one group home to another, Choo eventually was relocated to a large residential institution in North Chungcheong Province, where he spent the next 15 years living in close quarters with several hundred other people with disabilities.

“I used to think that I would spend the rest of my life locked up in an institution,” the 51-year-old says.

When Choo first heard about the COVID-19 outbreak and deaths at the Cheongdo Daenam Hospital’s psychiatric ward in February, it triggered a visceral reaction.

“All I could think about was that it could have been me,” says Choo. “In that kind of place, no matter how you try to protect yourself, you could still catch the coronavirus.”

Choo and other disability-rights activists say Korea’s institutional care system denies its residents opportunities to be active members of society and now, during the pandemic, puts their lives at greater risk.

The psychiatric ward outbreak has added new momentum to a relatively small but vocal movement that has for years pushed for the complete deinstitutionalization of people with disabilities from all types of congregate centers.

The Cheongdo Daenam Hospital in Cheongdo County, North Gyeongsang Province. (Hankyoreh archives)

had no say in their institutionalization. Some do not have the ability to ask for their release due to their impairment or are held back by bureaucracy. Others might fear an inaccessible world on the outside and resign themselves to their predicament.

The Korean government has recently implemented new policies that could lead to less reliance on institutions to care for the disabled. But some say reforming the residential care system alone isn’t enough to address the greater challenge of making society more inclusive for people with physical and cognitive impairments.

For Choo, having the power to take oneself out of the care system is the first step toward inclusion.

He says life at the facility was dictated by routine: wake up at 5am, breakfast at 6am, lunch at noon and so on.

“We could never go more than 100 meters away from our residential building and because it was a hilly area, I couldn’t go anywhere on my own,” he says.

He could no longer tolerate this perpetual monotony and lack of personal freedom and says in 2014 he began the process of deinstitutionalizing himself. After two years of navigating official regulations and filing the necessary paperwork, he was released.

Choo qualifies for full disability benefits due to the severity of his impairment, lack of family support and income level. He recently moved into a public housing apartment in Seoul and lives with a fully subsidized caregiver. Up until this year, he frequently participated in disability-rights protests and other activities, but now stays at home due to concerns about his health during the pandemic.

“Institutions have to be closed, and disabled people and non-disabled people should be able to live together,” he says.

Many other institutionalized people with disabilities are following in Choo’s footsteps, according to data from the Ministry of Health and Welfare (MOHW).

An estimated 2,700 individuals were discharged from residential facilities in 2019, according to Lee Ji-yeon, deputy director of MOHW’s Division of Rights Promotion for Persons with Disabilities.

Lee says the government is undertaking reforms that could enable many former residents of long-term care facilities to live more independently.

Writing in an email, Lee explains that since last year, people with physical and developmental disabilities have been given more access to assistance with daily living activities, vocational training and social programs, based on their “need and environment.” MOHW also launched the Community Care Initiative, which integrates housing and medical or assistive care for residents and during its current trial run can accommodate up to 3,700 people with disabilities, she adds.

In an effort to phase out large institutions, the government has required all new care homes to limit their capacity to no more than 30 residents since 2012.

Lee writes that “to help people currently living in long-term care facilities become a part of society,” deinstitutionalization has become a “national task” and officials are surveying some 25,000 residents at 628 centers nationwide in order to better understand their needs for a transition to independent living.

And in light of the high potential for COVID-19 to spread inside these places, Lee adds that authorities are also inspecting risk factors such as room size and air circulation at these locations.

A disabled person who wishes to withdraw from a facility only needs to express their “consent” to the termination of services, but if the resident “does not have the ability to make decisions,” a legal representative can act on their behalf, says Lee.

But some activists say these measures do not go far enough.

Byun Jae-won, policy director at Solidarity Against Disability Discrimination, says the new regulations won’t make it easier for people to discharge themselves from the residential care system.

“It’s almost impossible” for an institutionalized person to leave on their own, he says. “If they don’t have support from the outside, like family or from activists, they won’t be able to get out.”

Byun explains that for some people with certain types of disabilities, just completing the paperwork is a barrier to getting out of a care center. And over the past 20 years, his organization has assisted around one thousand people complete this documentation so they can “escape” their institutions, he says, adding that facility owners tell residents that “they can’t survive” once they move out.

Solidarity Against Disability Discrimination’s office in Seoul is a transitional space for many formerly institutionalized people. Some receive job training at the fourth floor’s cafeteria and coffee shop. Classrooms are located on the building’s second floor.

A whiteboard in the hallway shows a schedule for courses on basic English, theatre, university entrance exam preparation and disability rights.

Byun says whether an institution has hundreds or just a few dozen residents, basic freedoms, like deciding when to wake up, choosing what to eat or using the bathroom, are still restricted.

And as long as people continue to live in these congregate facilities, the chance of another “mass infection,” like the one in Cheongdo Daenam Hospital, increases, he adds.

But some observers caution that life outside a residential facility is not inherently better for people with certain types of disabilities.

Kim Seon, the director of a private community care center in Gunsan, North Jeolla Province, says “it’s a shame that some people think that every residential facility is a prison.”

“Deinstitutionalization isn’t just about taking people out of residential centers; it’s about improving the quality of their lives while they are there,” she says. “We focus more on being a home for someone who has no choice but to live in this setting.”

Her facility, the Sum99 Support Center, currently limits visitations due to social distancing protocol.

Speaking by phone, Kim explains all 30 “tenants” at her center have an intellectual impairment and live in private rooms in either shared houses or apartments. The facility employs 30 staff and volunteers to assist with daily living activities, like cooking, but tenants are taught life skills such as how to independently shop for groceries or make appointments at beauty salons.

“I don’t think the social welfare system is ready yet for people to come out of institutional care,” Kim says. “We’ve had 12 people leave our facility, and I don’t think their lives are that much better than they were here.”

After years of relying on the private sector to care for people with disabilities, the Korean government is now attempting to take on more of this responsibility, says Seo Won-sun of the Korea Disabled People’s Development Institute.

Expanding the Community Care Initiative and closing large institutions are good plans, he says, but social services aren’t ready now for an influx of deinstitutionalized people.

“If you want to have real community care, you have to have enough services in the community,” such as enough housing, a sufficient number of caregivers and a way for people to earn a basic income, he says, adding that otherwise, “It can be better to stay at an institution.”

Seo says, for example, he has met many patients with spinal cord injuries who prefer to stay in a hospital or residential care facility because of the convenience. They don’t have to worry about finding accessible restaurants or paying for modifications to their home or vehicles since the government only subsidizes a small portion of those costs, if any, he explains.

“We need more time” to develop an “applicable” deinstitutionalization policy, Seo says.

But Jang Hye-yeong, a National Assembly lawmaker from the progressive Justice Party, suggests that instead of regarding deinstitutionalization as just “getting people out of institutions,” efforts should also focus on “preventing more people from going in.”

“Complete social integration is the only real solution to the institutional care system,” says Jang, whose 2018 documentary film “When You Become an Adult” followed her efforts to remove her sister, Hye-jeong, from a residential care home where she had lived for 18 years. The two now live together in Seoul.

Jang, in her first year as a proportional representative, says those changes should start with desegregating the educational system.

“Not everyone has experience living with someone who has a disability,” she says. “If children with and without disabilities study together in the same classes, then as they grow up, they will think it’s natural to be together.”

Jang says the Moon administration’s recent social welfare reforms, including abolishing a ranking system that many rights groups claimed unfairly categorized people with disabilities, were just “symbolic” and underfunded. She says official policy still doesn’t recognize that individuals with physical and developmental impairments can be productive members of society.

“The government doesn’t see their potential and just pities them,” she says.

Baek Jae-wook, 15, is one of five teens with an autism spectrum disorder who have earned barista certifications from the Jayeondo Cafe in Incheon.

Improving social integration also requires bringing down economic and employment barriers that prevent many people with disabilities from living independently, say some advocates.

Only 34.9% of people with disabilities have jobs, according to a survey published by Statistics Korea earlier this year. And there is no law that requires employers to pay the minimum wage to disabled workers.

Kim Ji-hye, whose teenage son has autism, says prejudice prevents many people with a developmental impairment from earning a living.

“Employers are afraid of hiring someone with autism because they’ve never had any experience knowing that kind of person,” she says. “If my son didn’t have autism, I might feel that way, too.”

Kim is among a small group of parents of children with an autism spectrum disorder who live on Incheon’s Yeongjong Island. Last year, they created a space where their kids could learn job skills, but perhaps more importantly, eliminate some of that social stigma.

Standing behind the Jayeondo Cafe’s coffee bar, Baek Jae-wook places freshly ground beans into the portafilter of a commercial espresso machine. While the coffee brews, he scoops ice into a plastic cup and soon pours the Americano over the cubes.

Baek is one of five teens with autism who’ve earned barista certifications here.

While he’s eager to show off his degree, which is framed and rests on a bookshelf in the cafe, Baek shies away from answering direct questions.

“Who would ever hire someone like that,” Hong Joo-yeon, his mother, half-jokingly yells out from across the room.

She says the cafe isn’t just a barista training program — it’s a kind of “therapy” for these children.

“A cafe is one of the most interpersonal kinds of businesses that someone can work in," says Hong, 52. “Here, my son can meet people who aren’t in his family, take their orders, listen to them and improve his ability to communicate.”

Like many small coffee shops this year, the pandemic has hurt business at the Jayeondo Cafe. But Hong says the “goal was never to make money” and explains their objective is for people with a developmental disability and those without to be exposed to one another.

Another goal is to demonstrate to other families that their disabled children can be integrated into the community.

Hong says she never considered sending Jae-wook to live in a care home. She speculates that some parents institutionalize their children because they don’t realize their capabilities and also because some feel uneasy about having a child with a disability.

“I’m not embarrassed by my son,” Hong says. “I tell other parents of kids with autism that they shouldn’t feel ashamed about their child’s disability.”

By Jason Strother, freelance journalist

Please direct comments or questions to [english@hani.co.kr]

This work was supported by the National Geographic Society’s Emergency Fund for Journalists