Since being diagnosed with motor neurone disease, sometimes known as Lou Gehrig’s disease, in 2010, Yoo, 55, now finds himself facing the reality that the country’s disability care budget covers only half the cost of the home help services that he needs for 24 hours a day.
“I can no longer work and take care of myself, but I sure don’t want sympathy. I just want to be treated fairly by the government, whose primary goal is to protect its citizens,” Yoo told The Korea Herald.
“It’s a tragedy for myself and also for other people like me whose lives will be affected by the government’s negligence toward the plight of us who cannot afford to pay for the 24-hour care services.”
The government’s lack of support left him with no choice but to give up his independent home life to receive 24-hour care at a cheap medical facility, Yoo said.
While South Korea’s new government vows to address social inequality by boosting the minimum wage and unemployment benefits, it still largely fails to come to grips with the challenges faced by people with disabilities who need 24-hour care, Yoo and other activists said.
They say the government’s care package only allows them to receive 13 hours of home help service a day, even though they need 24-hour support. The remaining 11 hours come as a burden for each city and province to cover, and in many cases, disabled people have to pay for care out of their own pockets.
According to government data, disabled South Koreans make up around 5 percent of the country’s 50 million population.
Since 2015, the capital Seoul has vowed to provide 24-hour care services for up to 200 people with severe disabilities, but currently only 98 people are receiving the full package, according to one of its district offices.
“Our district has set up our own budget of 270 million won ($239,000) for the past few years and even increased the budget for this year to reflect the inflation rate. But the budget is still not enough to cover 24-hour services for all those who need it,” said Lee Kang-se, head of the social welfare department of the city’s Songpa-gu district.
Insufficient home care support can lead to deadly incidents.
In June 2016, a 40-year-old woman with Lou Gehrig’s disease died from breathing problems at home after her respirator was accidently withdrawn from her mouth.
Another similar incident happened in the same year, taking the life of a 50-year-old woman with brain disorder. Both were left unattended at the time of the accident.
“It’s time for the central government to come up with a solution,” said Kim Jun-woo, head of a local charity group, Songpa Solution Center for Independent Living. “We can’t just blame the district offices for not providing the 11 hours that the state left them to provide.” Kim said.
Park In-Chun, 59, has been a quadriplegic all his life and has to rely on three different government agencies for 24-hour care. He came to Seoul’s Songpa district five years ago to receive better care. Like Park, many people with disability are moving to different cities because benefits differ from city to city.
“I’m dependent on care workers all the time. It was OK when my parents were alive, they paid for everything,” he said.
But earlier this year the district office reduced his covered care hours from 120 to 100 a week.
To make sure he receives round-the-clock care, his caregivers work an extra 30 minutes for free after each shift. On top of this, they run errands for him in their spare time, as Park cannot be left alone and cannot afford to have more than one support worker at a time. He needs two people to lift him and relies on help from people from his church to help him bath.
“For disabled people, it’s not like we want special rights. I tried to commit suicide three times. I failed. I want to live but living like something else, with purpose,” he said.
Last month, Park wrote a letter to the district office asking that his care hours be reinstated. He received a response saying that the letter was forwarded to the Welfare Ministry but has yet to hear back. “I am alive. I just want some support from the government,” he said.
The Ministry of Health and Welfare told The Korea Herald it was “in the works to address the disability care issue,” but denied to reveal further details.
The provision of 24-hour support for the seriously disabled is not welfare, it could be a matter of life or death, says Cho Hyun-soo, policy director of a nonprofit activist group, Solidarity Against Disability Discrimination.
“The problem is in case of an emergency, the lack of support could kill these people,” Cho said, stressing that Korea’s state support for disability care services is far below the average for member countries of the Organization for Economic Cooperation and Development in terms of its budget.
Things are tough for the care workers as well.
Wages for home care workers have been largely stagnant, hovering just above 6,900 won an hour. The workers are paid by the government, but the center takes a 25 percent cut of their pay for connecting them and covering their insurance.
But low wages often drive people who find the work meaningful out of the field, Cho noted.
“These people care deeply for their work, but because of low wages they often do part-time jobs at night or even go and find other kinds of jobs,” Cho added.
By Bak Se-hwan and Anita McKay (email@example.com) (firstname.lastname@example.org)