Half a million disabled suffer for 12 hours a day

Posted on : 2012-10-29 14:00 KST Modified on : 2019-10-19 20:29 KST
Recent death highlights culture that wants the disabled to do only the most basic things

By Choi Yu-bin, Kim Kyu-nam and Jung Hwan-bong, staff reporters

A memorial area was set up at Hanyang University Hospital for Kim Ju-young, who died tragically in a fire at her home on Oct. 26. The wake has become a place for disabled individuals to rage after hearing the news. Their anger illustrates poor welfare conditions facing severely disabled people in South Korea today.

Kim Ji-hyeon wept as she visited the wake on Oct. 27. “I’ve been to Ju-young’s house before,” recalled the 39-year-old Kim, who holds level one disability status due to brain lesions. “It was so old that I worried a fire could break out if the wires short-circuited. And what ended up happening. . . . It could happen to me, too. It’s the exact same thing for me.”

Two years ago, Kim left her parents’ home in Yeongwol, Gangwon province, to live on her own in Seoul. Then in their seventies, her parents didn’t know how long they could continue to care for her. Kim began receiving help from an assistant working 12 hours a day, 360 hours a month. The other half of the day is sheer terror.

Indeed, Kim had a close call a month ago. After the assistant left for the day, she tried going to the bathroom by herself and ended up falling out of her wheelchair. Her head struck the ground so hard that the tile broke. Kim called her assistant that night and asked her to return and take her to the hospital.

Jeong Jong-hun, 52, is raising a disabled daughter. He came to the wake after reading in the Hankyoreh about Kim Ju-yeong’s tragic death. It hit very close to home.

“The government wants the parents to take responsibility, but what will happen when we get older or pass away?” he asked.

Her daughter, a high school student, suffers from a level one disability and receives care from an assistant - 180 hours a month, or about six hours a day. She is not entitled to any more than that because she lives with her parents.

“To get any more care from an assistant, she would have to move out on her own, and that isn’t possible,” Jeong sighed.

Kim Ui-seop, 45, is also the father of a disabled daughter. “For disabled people to live on their own, they need to have round-the-clock care from an assistant,” he said as he sat at the wake. “Without that kind of system in place, the ‘self-reliance’ thing is a lot of empty talk. They’re basically living in a cage.”

Kim said his wish was “every [disabled child’s] parent’s wish: we desperately want to die exactly one day after our child.”

September saw another death of a severely disabled person. Heo Jeong-seok, a 33-year-old man with a level one disability, died when his respirator became detached after his assistant had gone home. The 55-year-old mother of Oh Ji-seok, a 29-year-old with muscular disease, has been worried sick since hearing of Heo and Kim’s deaths. Her son spends the whole day lying in bed with a respirator.

According to Statistics Korea, there are 2.15 million disabled people registered with the Ministry of Health and Welfare. About 200,000 of these are Level 1 disabled, among them only 50,000 have a caregiver. 350,000 are Level 2 disabled, whose disabilities are similar to Level 1, but are nevertheless not eligible to receive help from a state caregiver. Roughly 500,000 disabled people therefore do not receive state care.

One time not long ago, the mother of a disabled son stepped out for a moment when the assistant wasn’t there. Her son’s respirator fell out. He struggled to send a text message to his mother. She rushed back to find her son’s face had turned black. The mother, who spoke on condition of anonymity, said, “Ever since my son almost died, I’ve traveled by motorbike even when I’m going somewhere close.”

One main reason disabled people want to live on their own in the first place is because they hate being a burden on their family. Many in South Korea opt to live in a facility for the disabled. They are not entitled to the services of an assistant unless they have a level one disability, and even then they require a lot of help from their family.

Four years ago, Hwang In-jun, 36, decided to go to a facility. He lasted for about two years. It felt like a prison, with seven to eight people living together in one room.

“There were restrictions on every activity, eating and everything else,” he recalled. “I dreaded the thought of living there until I died without being able to do anything, without having anything to live for.”

For those who do muster up the courage to live on their own, the reality check can be harsh. Choi Jin-young, a 41-year-old with level one brain lesions, began living on his own nine years ago after the death of his mother, who had been taking care of him.

“A year ago, I was going home at night and someone offered to help me,” Choe recalled. “He followed me and then took off with the bag from my house. I was so scared.”

Choi feels that a “revolution” is needed for disabled people living in fear of an accident or victimization. “There need to be a lot of systems in place and a lot of things changed,” he said. “A livable society for the disabled is an even more livable society for the non-disabled.”

The people who get married and have children also face many new obstacles. A Daegu resident in her mid-30s with brain lesions, identified by the surname Kim, said she received 180 hours of care a month when she lived alone. After she had a baby, that number dropped to 100. The regulations state that assistance hours must be reduced for people who do not live alone. Kim actually saw her support cut because she was living with a newborn child.

Kim had no way of caring for the baby, and ended up sending it to an orphanage two years ago. She had hoped to come back for the child in a year, but the reunion has yet to happen.

Choe Yun-hui, a 38-year-old with level one brain lesions, saw her assistance hours fall from 180 a month to 80 after she gave birth to a child in January. “I have to take care of a baby,” a tearful Choe said. “How am I supposed to live if they reduce the hours? The message is that disabled people shouldn’t get married and shouldn’t have children.”

“We’re people, too,” she continued. “People who want to get married and have kids. . . . What this country thinks is that people who have a disability should only do the most basic things.”

Disability rights groups argue that round-the-clock care needs to be made available.

“Lives are being endangered by this lack of caregiving services,” said Nam Byeong-jun, secretary-general of Solidarity Against Disability Discrimination.

Nam said the most urgent order of business is guaranteeing round-the-clock services for the most severely disabled individuals.

Most of the world’s developed countries - including Japan, the US, and the countries of Europe - do not limit the number of service hours a disabled person is entitled to. It is also rare for individuals to shoulder the costs.

Neither the United Kingdom nor Japan sets limits on caregiving services. A care manager employed by the local government decides a suitable number on a case-by-case basis. In the US, the situation differs from state to state, but California and many other states do not set a limit, and people earning 75% of poverty level incomes received services at no charge. In Sweden, the government subsidizes all caregiving services, irrespective of income, with round-the-clock services available as needed.

 

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