Three-year-old Asahi Watanabe, who was born with a genetic disease that requires the use of a feeding tube for hydration, receives care from nursery staff at his Tokyo home — an unusual arrangement in Japan where family members of children with disabilities are often called upon to provide all the attention they need.
For many who are not hospitalized, it is often the mother who must care for them.
But in Asahi’s case, because of the nursing care he receives at home for up to eight hours on weekdays, both his parents are able to work.
“I had searched for nursery schools that take care of children needing special care outside Tokyo, and asked the local government whether such a place was available for Asahi,” said Asahi’s mother Yoko, 41, in a recent interview. “But I was told it would be difficult to get him admitted.”
Yoko had considered quitting her job. But while desperately searching for a care facility on the internet, she found an authorized nursery service called Annie that provides in-home child care to disabled children. Asahi has now been receiving home child care from Annie since he was 11 months old.
Annie was the brainchild of Hiroki Komazaki, the founder and CEO of nonprofit organization Florence. Launched in 2004, Florence originally began with a nursery service offering care for sick children at home. The organization went on to open a nursery school called Helen, offering Japan’s first long-term child care services at nursing facilities for children with disabilities, in 2014, before establishing a home-visit nursing service for disabled children in 2015 — also the first of its kind in the nation.
The names Florence, Helen and Annie were inspired by 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, whether her sick child could attend and if I could help out,” said Komazaki, who holds a license as a child care worker.
“I looked for a nursery that could take care of children in need of medical care, but was surprised to find that there weren’t any — even though Tokyo is such a big city,” he added.
According to Komazaki, more than 90 percent of mothers with disabled children needing medical care at home in Japan are most likely to be unable to return to work full time.
“Though child care is intended to exist for all children, it did not. I started Helen and Annie so we can look after such children.”
Since they were started in Tokyo, Helen has provided care services for 76 children and Annie for 55, according to Florence.
Annie operates under the framework of home-visit child care services that became subject to public funding after revisions to the law on child-rearing support came into effect in April 2015.
After making preparations to apply for support from Annie, Yoko met with “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 Yoko and her husband wanted their son, who has various disabilities, to receive the in-home child care 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 child care workers as a source of stimulation.”
When Yoko received the call to say Asahi would be admitted to Annie, she broke down in tears.
“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 child care worker who is responsible for their nurture and basic medical care at home. Licensed professionals from a nursing station set up by Florence also visit Asahi to check on his health. It’s one of the measures that puts parents’ minds at ease when they decide to leave their children in the care of the Annie service.
Annie also sets up a streaming camera that enables 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 child care worker, 32-year-old Hiromi Kohira, said the boy has developed “beyond expectations.”
“When we crafted a child care 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 child care that allows both parents to work.
According to the health ministry, the number of people aged 19 or under who need daily medical care — such as the use of a ventilator, a feeding tube or 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.”
Asahi’s care has brought out a “public persona” in him, 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 meet him.”