Hankook Ilbo: The Balance of Seeing the World

Jang Ye-won (pseudonym, 40), a ‘single mom’ raising a 12-year-old daughter and an 8-year-old son alone in Wonju, Gangwon-do. In mid-September, he got into a car accident while trying to pick up her son, who was supposed to have finished the ‘After School Care’ program at the Community Center for Support for People with Developmental Disabilities. While taking a taxi with her daughter around rush hour, the taxi driver accidentally bumped into the sidewalk. There was no one to pick up her son for him, so Yewon had no choice but to take the taxi to the center in a hurry. From the day after the accident, Yewon’s shoulders, back and body started to hurt. From middle school, he took care of his father for over 20 years, and when he was in his twenties, he was injured a lot while working as a care worker at a facility for the disabled. When he arrived at the hospital late, he was told that his bones had already weakened and that he needed hospitalization. His daughter also had to be hospitalized. But he had no one to look after his autistic son. He called several hospitals, but the only answer was that ‘accompanied hospitalization’ was difficult due to Corona. His son Jong-yoon (pseudonym) is intellectually disabled and autistic and can only communicate at the level of a 3-year-old, but he needed a place to understand and care for the characteristics of children with developmental disabilities. “For someone like me raising a child alone, it’s really hard when something like this happens. Family and close acquaintances will help, but I’m living in a different country (not my hometown). I have no family to turn to for help, and the people I know are only the parents of other (disabled) children…” Yewon said. Desperate, he visited the community center. He didn’t get much help, and he was told to go to the city hall. The first words of a city hall official who seemed to have inquired about family relationships were as follows. ‘Why don’t you leave it to your maternal grandmother?’ Yewon said as if exasperated. “No, that’s why I did. If my grandmother was here (Wonju) and didn’t work, I would have already asked her to be hospitalized with her daughter, so why would you come all the way here and tell the teachers?” Yewon, who left for a foreign country to protect her children from the abuse of her ex-husband, had nowhere to turn to other than public institutions for help. Her elderly mother was working as a caregiver in another area, so she could not put pressure on her. He begged for a place where he could leave his children, and the city hall said that he was introduced to a ‘short-term shelter for the disabled’ in the area. Short-term residence facilities for the disabled provide housing and daily life for the disabled, while the main guardians take a break. It is an institution that provides short-term care so that they can take care of themselves or attend personal business such as illness, condolences, overseas business trips, etc. It is usually available for about a month at a time, but according to the Ministry of Health and Welfare, there are about 1,700 people living in 157 facilities as of 2020. However, Yewon, who visited the facility while holding her daughter’s hand, had no choice but to return as she shook her head. The environment of the facility was poor, and all residents were adults except for one high school student. It was mainly a wheelchair-bound person with brain lesions and physical disabilities. In particular, Jong Yoon-gun has severe asthma and needed someone to help him in an emergency, but there were no medical professionals. It was like this. When I looked at the facility, I said, ‘Mom, I don’t think this is the case’… They say there are no (short-term care) facilities for children with disabilities in Wonju.” Another method was to entrust the son to a child care facility for children with disabilities in another area. “As per the manual. But they said that in order to receive the subsidy, my son’s address would have to be moved there. If I do that, after returning from the facility, I will have to research the school the child will go to from the beginning and register for special education from the beginning. What should I do? .” In the end, Yewon, who is desperate, is taking care of the child herself and is in a situation where she is going to outpatient treatment with a sick body. During the survey and interview process of the Hankook Ilbo Minority Team, one of the strong requests of parents with developmental disabilities was ‘to provide an emergency care facility’. It is said that a place where people with developmental disabilities can stay for one to two weeks is needed, free from the burden of ‘self-care’ when a guardian becomes ill or has a big problem at home. This is because when you have to be away from work for a few days, there is a limit to just getting the help of an activity supporter for the disabled. The government also recognizes this need, and plans to start the ‘Emergency Care Demonstration Project for the Developmentally Disabled’, which provides care in case of emergency, such as hospitalization or congratulations or congratulations, from April next year. However, it is still unclear how many people will be able to receive support. An official from the Ministry of Health and Welfare said, “We plan to install 40 locations in 17 cities and provinces across the country, and research is currently underway.” In addition to developmental disabilities, children with severe underlying medical conditions require more careful care. Jongyun-gun also suffers from severe asthma, so he needs an adult who can immediately administer a spray-type treatment instead of him when symptoms appear. He said that once sprayed, the effect of the medicine did not show, and the child fainted. That’s why her mom can’t help but be proud of herself. The problem is that this is considered a ‘medical act’ under the Medical Act, and no one can help. “My child attends a general school help class, and before entering the school, we talked a lot with the city and the school and had a visit. It’s a situation in which I decided to treat him immediately if he had trouble breathing, but the assistant teacher said that if he did this, he would be charged with a violation of the medical law.” The disabled person’s activity support staff shares all the daily life of the disabled, such as meal assistance, cleaning, transportation support, assistance to and from school, communication, etc. As in the case of Yun-gun Jong, the disabled person has an underlying disease, uses a gastrostomy tube, or has a suction cup. In the case of severely disabled persons who are in need, medical treatment may be formally or informally required from the activity support company, but there are concerns that such measures may always be regarded as ‘unlicensed medical practice’ and cause problems, so Teachers, teachers, etc. are in a difficult situation. “If I can’t take care of my son right away, I need someone else’s help. If Master Halbo (activist supporter) can’t do that, he’s telling me to leave the child alone. .. ‘Then what should I do when I have trouble breathing?’ When I asked the agency, Master Halbo told me that I had to get him in the car and take him to the hospital unconscious. I was like this. I shouldn’t say this, but… I really think the laws of Korea are crap.” With a sigh, Yewon said, ‘The more severe the disability, the less institutions you can go to. The more severe it is, the more programs you can use. Severe, severe…’ This is what reporters have been hearing throughout the survey and interview with the families of 1,071 people with developmental disabilities. It seems that this should be done, but the reality is the opposite, partly because of the system in which more labor and expertise are needed for education, rehabilitation, and care for severely disabled people, but the additional compensation is not sufficiently provided to service providers. Jong Yun-gun also had many ups and downs before finding a daycare center to attend and meeting the current activity support company. All of them were rejected. It would be scary to take responsibility if it becomes a problem after giving (treatment). Without a reason, I took care of myself for a year and a half, but the child became completely my own naughty boy, so I couldn’t even interact with it socially, and it was so difficult for me…” Yewon, who couldn’t stand it, was so desperate that she was refused admission at the daycare center she last contacted. “So I said, ‘Director, if you don’t accept it here, I have to go to the real protest. My child is not learning anything because of asthma, isn’t it a violation of human rights’… I have asthma, so my son also has (asthma), but he is not healthy. It’s sad that I met poor parents and my child got sick…” Yewon blamed herself for being a child. Fortunately, the daycare took care of his situation and accepted his son. However, because of asthma, Jong Yoon-gun was not able to participate in outdoor activities such as sports or mountain climbing. It is said that there were quite a few days when my mother was doing ‘home care.’ It was difficult to meet the activity support teacher. In the past, Yewon was with her all the way to and from school, but as both mothers and mothers have asthma, that time became more and more difficult.” My son and I both have asthma, so we have to go slow when we walk. It was difficult for me as I continued to hold and carry the child. In the end, I thought I should use the activity support. It was also very, very difficult to meet the teacher. I put a waiting list at all five institutions, but in some places, the turn was fifty times… I was rejected because of my son’s asthma. I hung it in March of this year, so I started writing it in June.” When asked what he would like to say one last time, Yewon answered, “I wish there were more institutions and systems. It’s so unfair… If I win the lottery, I want to set up an institution with like-minded mothers.” ▶Interactive Shortcut: Click to view the entire survey results of 1,071 people. If you don’t click Copy the address (interactive.hankookilbo.com/v/disability/) and enter it in the search bar.