The Hankook Ilbo : A balanced view of the world

“Have you ever cried while watching a gag concert, reporter?” Choi Ji-yeon (44), who lives with her son with autism spectrum disorder in Yeoncheon-gun, Gyeonggi-do, asked the reporter at the end of the interview. It was about the sadness that only families with developmental disabilities can feel. “There is no television in our house. On the contrary, there are times when I feel depressed or hurt when I watch TV. You know why there are kids who appear as ‘Mojiri the Fool’ in comedy shows? The audience laughed, but there were tears in my eyes. I didn’t even know until I had my son. I would have laughed like that too.” Choi Min-jae (pseudonym, 13), who inherited the surname Jiyeon, a single mother, has a ‘severe disability’ on the autism spectrum (former grade 2). He noticed his son’s autistic tendencies around 12 months old. It is much earlier than the average discovery time (3.1 years for autism). However, I had to wait five months to be diagnosed at Yonsei Resignation Hospital in Seoul. Even that, recently, treatment by a famous pediatric psychiatrist in the metropolitan area is already full of doubts until 3 to 5 years later, so parents can’t even dare to pay. (Related article ▶ “Professor specializing in autism, appointments for treatment until 2027 are complete”: If you can’t click, please search for this address at www.hankookilbo.com/News/Read/A2022100310430004161) I came out into the hallway and cried ‘I was originally confident of raising my child on my own. My mother raised me on my own too, so she said, ‘What can I say I can’t do?’ After raising my child, I got a job in Seoul. go back to work like I used to.” However, after learning about her son’s disability, Jiyeon’s ‘highest goal’ became her child’s independence. To do that, he had no choice but to devoted himself as much as he could to education and rehabilitation treatment. Immediately after the diagnosis, from the age of 17 months, he traveled two hours round trip from Yeoncheon to Uijeongbu to visit the developmental rehabilitation treatment room. As I make a living on the basic livelihood security, I was determined to do everything I could even if my circumstances were not enough. Jiyeon’s mother and daughter still attend rehabilitation therapy classes in Yangju (special physical education and play therapy) and Uijeongbu (swimming). This is because there is only one treatment room in Yeoncheon-gun that is supported by the county office, and there are not many teachers there, and they change often. The training of the treatment room has about 45,000 to earn per session. “The unit price of the good rehabilitation voucher progressive government supported is 27,500 won per episode (maximum 220,000 won per month). There is a big difference between the actual cost of the treatment. However, the cost of rehab treatment is basically 40,000 to 50,000 won per session, so therapists have to earn money to get a job. You don’t even get to that extent. Given this situation, co-payments (for families with developmental disabilities) have no choice but to increase.” As much as the lack of infrastructure for the disabled in non-urban rural areas and the careless welfare administration, it was ‘a lack of understanding of autism and developmental disabilities’ that made it difficult for Jiyeon. In the past, Ji-yeon had completed the training course for ‘Supporters of Activities for the Disabled’. In addition to preparing a means of livelihood in case of an unexpected situation later on, I also wonder, ‘What kind of education will the people who come to see my child get?’ However, at the time when the cause of developmental disability was explained as ‘mother’s smoking and drug addiction’, Jiyeon’s hands could not help but shake. Developmental disabilities are known to be caused by various complex factors such as genetic causes, acquired structural damage to the brain, and environmental factors. In particular, some criticize the prematurity of women, but in the case of autism, research results have accumulated that it is related to the age of men (fathers). “Developmental disabilities have no different causes. But when my mother educated me by saying that a child with a disability comes from drinking and smoking, I was so angry and reckless. It creates prejudice.” Ms Jiyeon said that other mothers of children with developmental disabilities around her also had the experience of hearing from a friend of her child’s age, ‘Auntie, did your ○○ teeth hurt because you smoke?’ “What do 1st and 2nd grade pupils in the elementary school know? What’s wrong? They must have seen and heard adults saying things like that, blaming (smoking). I have no choice. It hurts my heart.” Minjae-gun, who grew up in a difficult situation in Yeoncheon-gun, where there is no day care center or special school for special children, will go to middle school A next year. He I almost sent him without a special teacher. The reason was that it was difficult to arrange a teacher if there was only one student with a disability. Middle school B, which was suggested as an alternative by the local government’s special education support office, was 30 to 40 minutes away. one way on public transport. Given his son’s characteristics, we couldn’t think of sending him away. “Middle school A has a shuttle bus, middle school B doesn’t. But they say, ‘Mom, there’s a middle school B closer to my house. This caught me. The child cannot kill even one ant. I am afraid that the ants on the ground will die, so I walk carefully. I play with the dog walks down the street for a while, and I stop and look at the birds in the sky. If I walk like that, it’s a 5 minute distance. It takes 2 0 to 30 minutes to get there. But they send me to middle school where I have to walk 15 to 20 minutes to the bus stop before getting on the bus? That’s it.” The moment I made up my mind to ‘let’s go to middle school for now, let’s persevere somehow’, I heard another student with a disability coming, just like Chun-woon. Jiyeon had many times to worry about moving because of such poor education and rehabilitation treatment infrastructure. In a survey conducted by the Hankook Ilbo Minority Team on 1,071 households with developmental disabilities, more than 60% of respondents answered that they had already moved or considered moving because infrastructure problems in 12 out of 17 metropolitan governments across the country. . said Mr. “Special schools are said to have sprung up here and there these days, but they are mostly chosen for short distances. If you have enough money, you will move. When I looked around, they usually go 3 or 4 years in advance and wait. But right now I can’t even dream. Right now I live in one room house with 10 million deposit won l and a monthly rent of 250,000 earned. How can I move?” (Related article ▶Find a special school, pay off debts and move… For special classes, “Go to another school”: If it doesn’t work, look for it at www.hankookilbo.com /News/Read/A2022100409060001371. ) He said the most difficult thing was the ‘money’ problem. Although local governments provide livelihood benefits, they constantly put psychological pressure to ‘do economic activities’. About 10 years ago, when my son entered the day care centre, I was told by the ward office ‘that we could not pay any more.’ It means you have no time or place to work. There have been times when local governments have asked me to report ‘nonexistent income’ as if it ‘exists’. Otherwise, support was difficult. I did. reluctantly, and the money was deducted from my supply and demand expenses. Sometimes, from Monday to Sunday, I was told to write down in detail what I do every day. “It was very humiliating.” “I feel like I’m constantly being forced to make a choice. If I work, I have to stop my son’s developmental rehabilitation treatment, and I need government support for treatment, but it feels like the local government is asking me to do it’ choose one or the other’ I would prefer. If you take responsibility for (care), I will go to work comfortably, but in the absence of such a system or environment, (to choose between money and treatment) only to raise the child as a ‘neighbourhood idiot’ ‘.” I tried to use the ‘disabled activation support service’, which was given 120 hours a month, but no activity support company was willing to come even after posting a notice to the activity support provider in Dongducheon. “I understand why you say, ‘Shouldn’t you do public work?’ But I want you to understand the situation of a mother who brings up a disabled child alone. I completed my education just in case. But after school, I have to take him to the treatment room, and during the holidays, my child doesn’t even go to school, so who would use me like this? They don’t understand that finding a job itself is difficult.” ▶ Go to the first part of Jiyeon’s interview: You can read more about Jiyeon and Minjae’s story through yesterday’s article (19th). If it doesn’t click, please search www.hankookilbo.com/News/Read/A2022111113130004896 ▶ Interactive Shortcut: Click to see all the survey results of 1,071 people. If you can’t click, copy the address (interactive.hankookilbo.com/v /disability/) and put it in the search box.