Moving beyond Limits
Nov. 2, 2016
A new kind of care center in Japan aims to promote a greater sense of independence for children who need 24-hour medical attention, and for their families.
More than 17,000 children in the country require round-the-clock medical care, which is usually provided by their parents.
A school in Tokyo offers extra support for special-needs students, including for Akio Kawata, who is in second year in junior high school. He has a congenital muscle disease that limits his movements, and can’t breathe on his own for long so he has to use a respirator.
Akio can move his fingers just enough to operate a laptop computer. That allows him to take the same classes as his able-bodied peers.
Sitting behind Akio in class is his mother Michiyo, who has to be there to adjust his respirator. Since Akio was born 13 years ago, Michiyo has been with him around the clock. She now understands what her son wants even if no words are exchanged.
Akio needs to have his throat cleared of phlegm several times a day, and Michiyo can instinctively sense when it needs to be done.
"I have to keep an eye on him all day long, even while he's sleeping. It's difficult to ask other people to do this, so I have to do it myself," Michiyo says.
Akio is starting to think about his future, and he is determined to get a job and eventually live more independently in order to lessen the burden on his mother.
“When my family is around, I get spoiled," Akio says. "I want to be able to do everything on my own, without having to depend on my family.”
Akio thinks a place called Momiji House might help him achieve his goal. It's the only public facility in Japan offering short-term care for children who need round-the-clock medical attention.
Youngsters 18 and under can stay for up to a week. They are cared for by nurses and other specially trained staff, and the goal is to provide them with opportunities to increase their autonomy.
Akio will stay for two nights and with the staff's help, he'll have a chance to test his limits. It's the first time in his life that Akio has been away from his mother, and the staff will nurture his independence by interfering as little as possible.
“We want to encourage him to be less dependent, so we ask him to tell us what he’s thinking and we respect his wishes. We hope that this will help him take his first steps toward his goal,” says head nurse Etsuko Takimoto.
However, Akio's mother has always adjusted the respirator and he’s never had to tell her what to do so he has a hard time explaining the process. He realizes how hard it is to explain things to other people.
It's the first time he’s ever spent the night away from his parents, and he has difficulty getting to sleep on the first night.
On his second morning, he hangs out with other visitors and staff members. He's having fun, and seems more relaxed -- then it's time to hit the books.
Writing with a pencil is tough for Akio, so he often asks his mother to do it. But on this day he gives it his all, with a little help from a staff member. He writes for more than an hour without a break.
“It’s a first. You did it all on your own," a staff member tells him.
Akio managed to explain what he needed and, perhaps more importantly, what he wanted. With the help of the people at Momiji House, he took a small step toward his goal.
"What do you want to be when you grow up?" a staff member asks him.
"A meteorologist," he replies.
Akio’s two-night stay was a success. When his mother arrives to pick him up, she asks him if he got homesick and cried.
“No, I didn’t,” Akio says.
His stay at Momiji House is helping him imagine a different kind of future.
NHK World's Takaya Kawasaki joins anchor Aki Shibuya in the studio.
Shibuya: So, Takaya, Momiji House is the first facility of its kind in Japan, right?
Kawasaki: Yes. Momiji House was opened this April and as of now, it's the only one.
A few private facilities have opened recently, but the high operating costs make them difficult to sustain. At present, 40 percent of Momiji House’s annual budget of 64 million yen is covered by private donations, so the idea doesn’t seem to be catching on.
Shibuya: Can you give me a bit more background about the necessity of this type of facility?
Kawasaki: Families with children who need round-the-clock care have lots of responsibilities. There are almost no daycare centers for very young kids with special needs, so they must be cared for at home. Even after they reach elementary school and are able to attend classes that provide special support, they usually need their parents with them at all times. Caring for their children 365 days a year places an enormous physical and psychological burden on parents. It’s clear to me that it’s too much to ask them to bear this responsibility alone, and that society must support them.
Shibuya: How has covering this story deepened your understanding of this issue?
Kawasaki: Akio told me about his dream of becoming a weather forecaster. That made me understand we need a system to integrate children like him into society as they grow up. Meanwhile, people from all over Japan are visiting Momiji House to learn from their example. That tells me there's an urgent need for more facilities like it. The Ministry of Health, Labor and Welfare has finally launched a special committee to discuss the matter.
Advances in modern medicine are saving more and more lives, but children with special needs need a lot more financial and structural support. And we need to start providing it soon so they can have a brighter future.