Spending most of his time lying down, Seon Cheol-gyu, 40, who has cerebral palsy, says he often felt like a bird trapped in a cage.

He cannot walk or sit down; he is supported by his activity assistant, currently provided by the government, for many things -- including going to the bathroom, taking a bath and having his meals.

“Things are better now as I’m at least living on my own,” Seon told The Korea Herald.

“I’ve lived with my parents and also have been placed in a nursing home for the disabled. And to be honest, both  experiences were rather painful.”

Seon is one of many disabled Koreans who are against the recent request made by a group of parents of children with severe disabilities. The group wants the current laws to be revised to allow family members of severely disabled persons to be paid personal and activity assistants. The request was submitted to the National Assembly on May 3.

The current laws are aimed at preventing potential abuse and negligence. Authorities say, should a family member not care for the disabled person despite government pay, it may be harder for the victim to report.

The state-funded service was launched in 2011, in accordance with the Act on Activity Assistant Services for Persons with Disabilities, which went into effect in 2010. The service is provided as a way to help those who cannot perform everyday tasks, such as dressing and bathing, and cannot find employment due to their disability.

However, according to a study by the National Assembly Research Service, the assistants are not being paid enough by the government, especially considering their job requires rigorous physical activities, such as lifting, repositioning and bathing the clients. As of this year, a single activity assistant is being paid 8,070 won ($7.53) an hour. It is only 540 won ($0.50) more than the minimum wage for this year, which is 7,530 won ($7.02).

The study also showed that about 89 percent of all activity assistants are women, and more than 50 percent of them are in their 50s.

Indeed, parents say most activity assistants do not stay long and are underpaid and those with the most severe forms of disabilities are therefore very often avoided. “As parents, we know our children the best,” Park Chan-hee, a mother of a 25-year-old son who has cerebral palsy, intellectual disability as well as speech impairments.

“I feel like most assistants provided by the government are not trained enough to care for my son.”

Park‘s son is among the about five percent of  Korea’s 51.2 million population who are registered as people with disabilities. Among them, only 36.1 percent are employed as of 2016. And not every disabled person in Korea has a family member caring for him.

According to a recent study by the National Human Rights Commission of Korea, there are some 11,000 Koreans with severe disabilities living in 233 nursing homes nationwide. The study showed that 67.9 percent of all residents in such homes entered the facilities against their will. About 45 percent of them said they had no choice because their families could not care for them at home.

However, Seon feels that the parents’ recent request to revise the laws does not reflect the perspectives and experiences of the disabled themselves.

He said although he lived with his parents during his childhood and teenage years, those days were in fact “extremely distressing.” As both his parents worked, he was very often left alone in the house. His parents divorced when he was a teenager, and from then on, he had to live with his father and his stepmother.

“My stepmother would often not give me any food,” he told The Korea Herald. “She would hit me whenever I didn’t finish my meal on time. My father was rarely home.”

After seven years of living with his stepmother, Seon was sent to a nursing home for the disabled in Cheorwon, Gangwon Province. He said the living conditions were “less than ideal” at the institution, where he was once served cold rice and kimchi contaminated by fly eggs.

Now, Seon, whp has managed to move out of the institution, lives on his own in Nowon district in northern Seoul. He makes a living by giving lectures on disability rights, and training those who want to become care workers for the people with disabilities.

“I don’t want my stance to be interpreted as a way of criticizing the parents,” he said.

“I’m saying that caring for people with severe forms of disability has its own set of challenges, and as people with disabilities, we should not have to rely on our parents. There should be professionals who are well-paid and well-trained for the job. Allowing parents to be our paid care workers will not solve this problem in the long run.”

Park Chan-hee, 53, whose 25-year-old son has multiple disabilities, said financial hardship led her to become a government-certified activity assistant for the disabled -- except she is banned from working for her own child.
“The thing about being a parent with a disabled child is that you rarely have time for anything else,” she told The Korea Herald.

“I’ve always wanted to work to get extra income aside from my husband’s salary. But it was hard because I couldn’t make any time to be job trained for new positions. I decided to become an activity assistant for the disabled because that’s what I have been doing for my son. Now, my question is, why can’t I get paid for caring for my own child, if I’m being paid for caring for children of others?”

On top of his pre-existing conditions, including cerebral palsy and speech impairments, Park’s son was diagnosed with a panic disorder a few years ago.

Since then, Park said, her son has been feeling a lot of frustration related to his disabilities, and such frustration is often expressed through aggression toward those around him. Once, while she was driving, he pulled her hair from the back seat.

“Although I’m an activity assistant myself, I don’t feel that many assistants provided by the government are prepared for such dangerous situations,” she said.

“I’ve been living with my son since the day he was born. The assistants provided by the government are required to undergo about 40 hours of training.”

At the moment, the activity assistant who works for Park’s son is also a parent of a disabled child. The two mothers have decided to work for each other’s children as professionals, as a way to make money while having someone trustworthy care for their sons.

“I want to be with my son and I want to care for him full-time, while getting the financial support that I need,” she said, adding that her second child, who is currently job seeking, also needs her support.

Things are not easy for activity assistants who do not have disable family members of their own either. In February, an activity assistant filed a public petition to the Presidential Office, asking for better treatment of the care workers.

The petitioner said care workers’ rights are often violated at workplace, especially at their disabled clients’ homes.

The worker said he or she was often forced to pay for a disabled client’s public transportation; the client would repeatedly complain that he was greatly inconvenienced because the assistant did not own a vehicle. Another time, a client did not give her any time to eat during her working hours.

The petition has been signed by 200 people as of Tuesday afternoon.

Jeon Deok-gyu, director of the National Disabled Personal Assistant Labor Union, said they are with their disabled clients --  that the current laws must stay and that family members shouldn’t be allowed to be paid to care for their one of their own as activity assistants.

“What about those who don’t have parents?” Jeon told The Korea Herald. “What about those whose parents have passed away? There should be a reliable option for every disabled person, regardless of how many family members he or she has.”

Jeon also mentioned that every disabled person should have access to mobility aids, such as wheelchairs, auto chairs and lifting hoists, rather than fully relying on activity assistants.

“Mobility aids should be a guaranteed right for every disabled person,” Jeon said.

“Because this is not the case in Korea, it is affecting care workers and activity assistants as well. Many workers suffer from injuries and muscular skeletal diseases from constantly lifting and repositioning their clients, who can be much heavier than the workers themselves.

“This is also related to workplace safety –- no one should get injured while at work.”

For Seon, to live on his own means to be an adult, himself -- rather than someone who needs to be constantly taken care of.

“No one should be sent to a care home if he or she does not want to be there. No one should have to rely on their parents when they want to pursue an independent life,” he said.

“I want to be my own person, and I don’t want to be a burden to my family, or anyone else. This is why I’m against the law revision.”

By Claire Lee (dyc@heraldcorp.com) 

Park Chan-hee is not her real name. Her name was changed upon her request. -- Ed.