“I am raising a child with multiple disabilities who also has severe autism, tic symptoms, and attention deficit hyperactivity disorder (ADHD). There is no place to welcome my child anywhere, and there are always measures to leave. Please expand severe autism institutions in the country. I desperately need a fence to protect my child even when there are no parents…” Choi Ye-hyeon (pseudonym), a mother who raises Hwang Min-jae (pseudonym, 10), a child with severe autism in Wonju, Gangwon-do, said, “To be honest, I am also very concerned about the death of a child who is the sole responsibility of parents. The situation where I have to take responsibility until now is scary and scary,” he confessed. He lamented that even in centers for people with developmental disabilities, children with ‘severe’ autism were excluded and placed in a subordinate position. The parents of people with severe developmental disabilities met by the Hankook Ilbo Minority Team complained in unison that “severe illness is a blind spot.” On the contrary, those who need more help in care, education, and rehabilitation treatment are being turned away from various institutions and services for reasons such as ‘difficult to handle’, ‘ineffective treatment’, and ‘not controlled’. Through the story of Min Jae-gun, who shows ‘challenging behavior’ such as self-harm, we heard the difficulties that children with severe developmental disabilities are experiencing. Minjae-goon attends a special school for students with intellectual disabilities in the region. Minjae-goon, an outgoing personality full of energy who ‘runs around all day’, is also struggling with defiant behavior. Min Jae-gun’s arm is full of bruises from self-harm. He often beats his friends. Yehyeon sighed, saying, “Even though I am taking a lot of medicine (to control my impulsiveness), it is difficult to control my aggression.” People with developmental disabilities often have difficulty expressing their intentions and needs, and their senses are often very sensitive. Because verbal communication is difficult, they want to draw attention to themselves or show defiant behavior as a means of expressing their desires. Actions such as running away from a stressful situation, repeatedly hitting one’s head, or throwing an object. Yehyeon said. “Since the child can’t express himself, even at school, if he cries or gets angry, he lies down and fusses like a baby. Then, it harms the other friends, and since special schools don’t have enough manpower, teachers can’t just look after Min-jae.” When Min-jae shows defiant behavior, the school sends the child to the ‘psychological stability room’. It is a space designed to stabilize the mind and body by installing dark lighting, sound equipment, cushions, etc. However, Yehyeon said that this space is not very helpful in correcting behavior and seems to leave only scars and trauma on the child. “The child barely communicates, but sometimes he does. One day I came home after school and he said, ‘It’s so hard to be locked up in there (psychological room) by myself.'” Educators and experts with expertise in ‘behavioral intervention’, which transforms challenging behaviors into adaptive and socially acceptable behaviors, are rare in Korea. This is why it is difficult to take any action other than that.It is the first time in the country to have a behavioral intervention specialist at the educational authorities level, with the selection of a full-time ‘behavioral intervention specialist’ by the Seoul Metropolitan Office of Education early last year. It visits students who are subject to special education (disabled children) at school and helps them learn social skills such as communication skills, patience, and waiting. In special schools, not only teachers, but also special education staff and social workers (formerly public service workers) who help students with disabilities in their school life are involved, and they are involved in supporting children with severe disabilities. “A special school usually has one special teacher and three or four students per class, but even if there are only three children with severe symptoms, it is difficult to conduct the class. One crying and fussing, and one running out of the classroom… Special education teachers also started their job after learning with a good heart, but the salary is not very high, and the work is hard, so after about 3 years, they leave because of bone disease. compendium.” Yehyeon seemed frustrated. When Minjae lived in the metropolitan area before school, he said that he used a behavioral intervention program called ‘Applied Behavior Analysis (ABA)’ and saw great results. It seemed like ‘my child has changed’. However, the cost of treatment is enormous. Eh, there is no place to take classes in Gangwon-do, so I’m currently discontinuing it. Mr. Yehyeon said, “My son really benefited from ABA, but I used to break a little less than 2 million won a month. The problem is that there is no room for that. ABA is a behavior that utilizes a ‘reward and punishment system’ in which children with developmental disabilities are rewarded (picture books, watching TV) when they behave appropriately, and punished (going up and down the stairs) when they engage in problem behavior. It is an intervention (corrective) method. Of course, it may not be suitable depending on the characteristics of individual children with disabilities, and some criticize it as ‘a treatment method that mechanically applies animal training to humans.’ Nevertheless, parents of children with developmental disabilities who have serious behavioral problems “Mothers with autism tend to go all-in, hoping that their child will get better somehow. Some places sell their houses to pay for treatment. That’s why they are poor.” There are a lot of damaged houses.” ABA costs between 80,000 and 100,000 won per hour (40 minutes). In order to be effective, you need to invest 2 million to 4 million won per month. Developmental rehabilitation treatment costs are guaranteed, but Korea’s developmental rehabilitation vouchers, which provide up to ‘220,000 won’ per month (raised to 250,000 won from next year), cannot afford ABA treatment. There are many centers where this is not possible. After a parent at the special school Minjae attended obtained an ABA license, Yehyeon was hopeful that her son would be able to take ABA classes again. However, as negotiations with the school did not go well, , The parent in question is taking a treatment class at another special school nearby. “One of the parents (of autistic children) studied ABA because he was too frustrated. He continued to provide free education to mothers while working as a research institute. School It would have been great for us if we had been connected to and had classes. Private ABA centers either have money or only accept young children. If we repeatedly teach them how to correct their behavior instead of just locking them up in a psychological stability room, we will know what to do with our children. You should know… It’s too bad.” People with developmental disabilities with challenging behaviors are also ‘objects to be avoided’ in the field of care. Parents who are aware that ‘autism is hard, so don’t take it on’ and ‘it’s hard, so you need to get more money’ are spreading among the disabled activity supporters who help people with disabilities in their daily lives. There were many testimonies from people who said, “Honestly, since I work for the minimum wage, the teachers at the activity support staff understand it. There are many children with ADHD who have autism. They keep wandering around, and they don’t recognize the danger themselves, so they just jump into the road.” It could be. The teacher has to stop it all, so it must be burdensome. I would also like to be a calm friend.” In the case of supporting people with developmental disabilities who show challenging behaviors, activity supporters must have professionalism as well as high wages corresponding to high labor intensity. However, the reality is different. In order to increase the rate), additional allowances of 2,000 won per hour are paid to supporters who take care of people with severe disabilities. However, in the case of people with developmental disabilities, the number of cases where additional allowances are applied is less than 1% of all activity support recipients. Many point out that the necessary education (40 hours of theoretical education and 10 hours of field practice) is also poor. Yehyeon, who is placed in ‘single care’ except for the time her son goes to school and speech therapy room, looks tired both physically and mentally. “It’s not that my child or I chose a disability, but it’s the parents’ responsibility. The reality of parents with developmental disabilities is that they have to take care of a 1-year-old child with intelligence until he dies every day of his life. I can’t sleep well looking after my child, My health can’t be good because the situation where I can’t rest for a minute or a second is repeated.” Neighbors’ hateful remarks also left indelible scars on Yehyeon and Minjae-gun. “They say, ‘Because that mother is an idiot, she must have given birth to a XX child,’ and they are automatically bullied on the playground. Our second (Minjae-gun’s non-disabled younger brother) ) approached (another child) and said, “Are you going to play with the ×× ×× family over there? Come here” and took the child away so that he could not play. The outside world is cold. When Minjae was born as a disabled child in our family, It was only then that I realized a little that people with disabilities are receiving this kind of attention from the world. If I had a lot of money, I would like to build a facility or an educational institution for the welfare of my children by giving away my real assets..” It’s because of what happened after my son graduated from school. “It’s more of a problem when you become an adult. If you are aggressive, the agency will not accept it. I hope you increase the number of day care facilities. My son (a person with a developmental disability who does not show challenging behavior) Like) I can’t go to the workshop, and I can’t be a barista.” “That is exactly what I want. When the child becomes an adult, I wish her mother would have a place to take her when she gets old and sick. If you are going to pursue a deinstitutionalization policy or if you are going to reduce facilities, please make sure to come up with an alternative to that. Honestly, whether or not my child will become self-reliant even if he receives lifelong education. A few years ago, her mother passed away, so there was an incident where an adult with intellectual disabilities begged on the street. (Related articles ▶[단독] Mother found 5 months after death, son who became homeless… The Tragedy of Bangbae-dong Hat: If you can’t click, search for it at www.hankookilbo.com/News/Read/A2020121305500004395) Even though it was a tragic event, I even envied his situation. He wrote himself asking for help and came out on the road, but my son doesn’t know how to write, and he doesn’t know how to ask for help. He’s really a child who can’t live without me. Tragedy will continue to occur as long as the government does not take care of these seriously ill children and parents bear the brunt of it… ”
