13th October 2019
TOKYO – Three-year-old Asahi Watanabe, who was born with a genetic disease that requires the use of a feeding tube for hydration, receives childcare from a nursery staff at his Tokyo home — unusual for Japan where family members of disabled children are often called upon to provide them with the attention they need.
For many disabled children who are not hospitalized, it is often the mother who must care for them, but in Asahi’s case both his parents are able to go to work because of the nursing care he receives at home for up to eight hours on weekdays.
“I had searched for nursery schools that take care of children needing special care outside Tokyo and asked the local government whether such places are available for Asahi. But I was told it would be difficult to get him admitted,” Asahi’s mother Yoko, 41, said in a recent interview with Kyodo News.
Yoko once considered quitting her job, but when she was desperately searching for a care facility on the internet, she discovered an authorized nursery service called Annie, which provides in-home childcare to disabled children. Asahi has been receiving home childcare from Annie since he was 11 months old.
Annie was the brainchild of Hiroki Komazaki, the founder and CEO of Florence, a nonprofit organization launched in 2004 that originally started a nursery service to care for sick children at home and later established the first home-visit nursing service in Japan for disabled children in 2015.
In 2014, Florence opened a nursery school called Helen — also the first of its kind in Japan — offering long-term childcare services at nursing facilities for children with disabilities.
The names Florence, Helen and Annie derive from Florence Nightingale, the founder of modern nursing, famed author and political activist Helen Keller and Anne Sullivan, Keller’s instructor and lifelong companion.
“I was asked by a mother living in Setagaya Ward who was looking for a nursery that her sick child could attend and whether I could help out,” Komazaki, himself licensed as a childcare worker, said.
“I looked for a nursery that could take care of children in need of medical care, but I was surprised to find out that there weren’t any even though Tokyo is such a big city,” said Komazaki.
According to Komazaki, more than 90 percent of mothers with disabled children needing medical care at home in Japan are likely unable to return to work fulltime.
“Though childcare is intended to exist for all children, it did not. I started Helen and Annie so we can look after such children.”
Since they started, Helen has provided care services for 76 children and Annie for 55, both in Tokyo, according to Florence.
Annie operates under the framework of home-visit childcare services that became subject to public funds after a revised law on child-rearing support came into effect in April 2015.
After Yoko made preparations to apply for Annie, she met “conventional” opposition from Asahi’s doctor and a visiting nurse, who believed she should stay home and take care of her child.
But returning to work was not the only reason that Yoko and her husband wanted their son, who has various disabilities, to receive the in-home childcare service.
“We thought it would be better for Asahi to associate with many other people,” Yoko said. “We don’t have much knowledge about how we should play with a physically disabled child, and thought that we should seek help from childcare workers as a source of stimulation.”
When Yoko received a call that Asahi would be admitted to Annie, she broke down in tears, she recalled.
“I was really happy because I thought I would be able to reintegrate into society, even though I’m a parent of a disabled child,” she said.
The children, including Asahi, are each assigned a childcare worker who is responsible for their nurturing and basic medical care at home. Licensed professionals from a nursing station set up by Florence also visit Asahi to check on his health — one of the measures that puts parents’ minds at ease when they decide to leave their children in the care of Annie.
Annie also sets up a web camera to enable nurses to remotely check on the condition of children at their homes and trains staff through role playing to swiftly respond to emergency situations.
Asahi’s childcare worker, Hiromi Kohira, 32, said the boy has developed “beyond expectations.”
“When we crafted a childcare plan for him in March (this year), we never thought he could start toilet training, but he can now use the toilet,” Kohira said. “Although it is not usual for him to learn things in a day, small things add up to tremendous progress six months or one year later, and that’s what I enjoy about taking care of him.”
Unfortunately in a society that is still on the whole inflexible, not many children who require medical care are able to receive home-visit childcare that allows both parents to work.
According to the health ministry, the number of people aged up to 19 who need daily medical care, such as the use of a ventilator, a feeding tube and suction for clearing an airway came to nearly 19,000 in fiscal 2017, increasing for the fifth consecutive year.
Japan also had the lowest rate of newborn mortality as of 2016, according to a UNICEF report released in 2018 — meaning more babies including those born with complications survive.
“An increasing number of older women are giving birth, and there are a growing number of extremely premature infants,” said a health ministry official.
“More babies’ lives are saved due to advances in medical technology and they can return home as medical devices such as ventilators become more sophisticated, increasing the need for child assistance at home,” she said.
While it depends on the degree of medical assistance required, many conventional nurseries are hesitant to accept children with special needs, although their parents wish to admit them, as facilities need to secure staff who can provide medical care, the official said.
To meet such demand, the government has started subsidizing local governments so staff can be trained in programs to provide medical care, in addition to providing funds to dispatch nurses.
But Florence’s Komazaki said training nursery staff is unlikely to lead to a fundamental solution. What is needed, he said, are more government subsidies geared toward hiring licensed nurses, noting that Annie has continued to incur losses since its establishment.
Nurseries such as Annie, in the meanwhile, are still anything but the norm.
“The psychological hurdle is high for (trained) nursery staff to offer medical care and become entirely responsible for children who need such care,” Komazaki said. “Currently these kind of nursery services are not feasible. There are many operators that want to join once they become feasible.”
The childcare has brought out a “public persona” in Asahi, Yoko said. “He has pride, and wants his nursery teacher to think he is cool and that he wants to be praised.”
It has also taught Yoko the importance of allowing her son to be more socially engaged with others away from home.
“I came to realize that my son is a social being regardless of his disability, and I started taking Asahi out to various places so other kids can see him.”