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Japan families conflicted when keeping vulnerable children home during COVID-19 pandemic

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TOKYO -- Among students on "voluntary leave" from school due to fears of contracting the coronavirus are those requiring daily medical assistance and those with severe impairments. They may have tracheostomy tubes and respirators, which put them at a higher risk of getting respiratory infections. A representative for a support group for such children says, "Guardians are stumped because they're stuck between their desire to have their children gain experiences at school, and fears that their children will contract infections."

    Keito Onodera, 13, a second-year student at the junior high level of a special-needs school in the Saitama Prefecture city of Soka, north of Tokyo, attended school in the 2020 academic school for a mere nine days. Since the 2021 academic year began in April, he has not been to school at all. Due to cerebral hypoxia he suffered when he was younger, he requires support in all bodily movements.

    He breathes through a tube that has been inserted through a hole cut into his trachea. He needs to have phlegm cleared out of his tube, and nutrients sent into his body through another tube connected to his stomach. Catching the common cold lands him in the hospital, and he is at high risk of a severe case of COVID-19 if he is infected with the coronavirus. There are an estimated 20,000 such severely disabled children requiring round-the-clock care between the ages of 0 and 19 across the country.

    Keito began his "voluntary leave" from school in June 2020, when the first state of emergency declaration was lifted and schools resumed classes. While Keito requires contact with people to receive assistance, he cannot wear a mask because of the saliva that drips from his mouth.

    His mother, Ayano, 41, was struck by fear that her son would contract the coronavirus where she could not be there to protect him. She told the school via phone that she would "wait and see for a week." She repeated similar conversations with the school throughout the academic year, and Keito's first year of junior high ended without him returning.

    The effects of being out of school began to manifest themselves physically in Keito. The amount of phlegm Keito excreted and the frequency of his spasms increased, and because he was not being active during the day, there are nights when he has trouble falling asleep. Every day, Ayano feels conflicted. "I wasn't able to let him go to school again," she would think. "But I'm glad he stayed healthy even though he didn't do anything."

    Ayano had been committed to having Keito go to school, because she wanted him to be stimulated as much as possible while he was well. With the end of the pandemic far from sight, she considered placing her son in a school where the teachers visit their students, who have severe disabilities or illnesses.

    But that would have required transferring Keito to a special-needs school far away from home. The school at which he is currently enrolled is in the process of considering online classes, so for the time being, Keito spends his time working on art homework and other school work that he has been given by the school. Ayano struggles with feelings of guilt for not letting her son attend school.

    The education ministry deems students who are absent from school due to fears of infection, and whose school principals determine that they have a rational reason, as being on "halted attendance" status (which does not affect the student's chances in entrance exams), instead of "absent."

    There is a tendency for the number of children who are on "voluntary leave" from school to grow in proportion with the spread of coronavirus infections. According to the Hokkaido Prefectural Board of Education in Japan's northernmost prefecture, the number of children who are being treated as on "halted attendance" status at prefecture-wide public schools except for the capital city Sapporo went from around 1,700 in October 2020, to more than 4,900 in both November and December of that year, when the number of infections greatly increased.

    However, because the same child who is out of school continuously is counted as one student, but children who intermittently stay home from school are counted as multiple students, the numbers do not indicate actual numbers of students.

    In particular, children who have underlying health conditions and disabilities are believed to be most affected. According to the Saitama Prefectural Board of Education, just north of Tokyo, from the time classes resumed after the first state of emergency declaration was lifted until the end of March 2021, students who stayed out of school due to fears of infection and were therefore on "halted attendance" status in public elementary, junior high, and senior high schools -- with the exception of those in the city of Saitama -- comprised approximately 2% of the entire school population, but around 15% of all special-needs schools.

    Some local governments have made online classes available. In the city of Fukuoka in southwest Japan, online classes have been available since June 2020 for students who stay out of school because they fear getting infected. Cameras are set up in classrooms, and lessons are livestreamed to tablets that have been loaned to students. An official in charge of the endeavor said, "We don't want to stop the learning process for children who want to go to school but can't."

    According to Tomohiro Hongo, 38, the head of Wings, an organization that supports children who require medical care and children with severe disabilities, the guardians of children with tracheostomies have been careful about disinfecting the tubes connected to their children's throats and other infection countermeasures since before the spread of the coronavirus. It was on top of their usual measures and concerns that the pandemic hit.

    "Depending on the illness, some of the children live very short lives," Hongo said. "If they don't go to school during those short years, they aren't able to experience much. I imagine there are a lot of people out there who are weighing the pros and cons of letting their children have those experiences and the risks of death after they get serious infections."

    Hongo also said that in addition to a decreased opportunity for children to receive stimulation if they do not go to school, there is an added burden on guardians to take care of them while the children stay at home. "I think we should have an environment in which the option to take classes online is available to everyone," Hongo said. "Having more people vaccinated is the only way to make it possible to eliminate guardians' concerns and allow their children to attend school."

    (Japanese original by Yuki Nakagawa, Lifestyle and Medical News Department)

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