Seishi Katsuren
Representative director, Be The Light Co., Ltd.

Be The Light Co., Ltd. (hereinafter, “Be The Light”) runs its main operations in Miyakojima City, Okinawa Prefecture, which has a population of 55,000. Be The Light began operations eight years ago; until then, there were no facilities at all on Miyakojima supporting children who need constant medical care. In this article, I would like to tell you about how children needing constant medical care currently live in the community on this island, Miyakojima.

Be The Light is carrying out around 38 projects at present. Ten of these are related to children with severe physical and mental disabilities: a home-visit nursing station, counselling support, care at home, care visits to the homes of those with severe disabilities, mobility support, an after-school daycare service, child development support, support visits to daycare facilities, home-based child development support, and care with daily living. In addition, we also have a respite project when children are in hospital. Our other projects include services for children with developmental disabilities, support in finding employment, group homes, corporate-led daycare, support for people in need, support for pregnant teens and teenage mothers, and support for NEETs and shut-ins: the need for each of these projects is not on a large scale, but they are all to address issues in the community.

Resolving the anxiety of families even a little

In terms of how we put together our disability-related projects, our goals are to develop our services to match the children’s growth, and to resolve the anxiety about the future experienced by the families of our users even a little.

For example, after a child leaves hospital, our home support provides home-visit nursing, visits for rehabilitation, home-based child development support, and care at home. We offer therapy support services and peer support to provide respite and emotional support to families. Once the children have become stronger, we have child development support services at our facilities. After they progress to elementary school, we provide after-school daycare services and support visits to daycare. After graduating from school, they move on to care with daily living, group homes, and support in finding employment. The premises of most of these projects are inside one large building, so we believe that it is easy for families to imagine what the future could look like. This large facility is also distinctive: it is a multifunctional medical, welfare, and childcare facility containing services for children with disabilities (day service for children with disabilities), a daycare for able-bodied children, and home-visit nursing etc. (Fig. 1) 

Fig. 1 Our multifunctional medical, welfare, and childcare facility

What prompted us to create this facility was when a parent of a child needing constant medical care exclaimed, “I want us to raise these children not only among children with disabilities, but also among able-bodied children.” In order to make this wish come true, we decided to run a daycare and create a large facility bringing all the children involved together in one place.

The children draw out each other’s potential

The results there have been above and beyond what we imagined. When a child who disliked walking training passed in front of the daycare during training sessions, they tried hard to walk and did not complain, perhaps wanting to make a good impression on the younger children. In the end, this eight-year-old child, who had been unable until then to walk unaided, suddenly became able to walk without assistance, surprising everyone around. Moreover, unimagined “chemical reactions” have taken place: the daycare children have come to play with the class for children needing constant medical care, and an older child with a developmental disability has been reading picture books to a child with medical care needs. I feel that abilities which adults cannot fully draw out are drawn out of each other by the children.

Various episodes occur within our facility every day, but I would like to introduce one here. When a child who needs continuous suction of the mouth and one of her support staff were playing together on the trampoline, a three-year-old from the daycare came along and asked, “What have you got attached to your mouth?” While the support person was wondering how to explain, a five-year-old from the daycare appeared and told the first child, “If that comes off the girl’s mouth, she’ll die; so take care while you’re playing.” After that, they played together on the trampoline. From this episode, we learned, “Adults think about various things, like discretion and consideration, and make matters complicated; but what matters is to tell them just the vital information in a simpler way.” 

Picture 1(left) Children find their own ways to communicate while playing shops
Picture 2(right) We love swimming in the sea, too

Emotional support by getting alongside families

When carrying out our projects, we place great importance on “Moral support rather than technical support” and “Becoming comrades-in-arms with the families”. We prioritize building relationships with users that are on an equal footing, and not merely providing practical support while they are at our facilities but, as far as possible, getting alongside the families and providing emotional support.

Whatever decisions families may make, we want to accept and incorporate these. We want to be professionals who support people in living ordinary lives. I would like to introduce some of the events we hold which brighten up these ordinary lives. These are events for children needing medical care and their siblings, and involve staff of the prefectural hospital and ambulance crews. They ride on jet skis, or in kayaks or on stand-up paddle boards with their families; they swim in the sea, with ventilators or suction equipment in waterproof bags.

Sunset cruising takes place with the collaboration of a local diving shop, and is accompanied by nurses and an electrical generator. We also have a sports day and a show by the young children, for which we take over an air-conditioned venue. The mothers of the children needing medical care push their children’s buggies in races, and parents and siblings all take part in contests such as throwing beanbags through hoops, tugs of war, and relay races.

There are many other events that able-bodied children take for granted, but that children needing medical care have had to give up on. By involving the local community, we are able to offer these events. These are what we mean by “ordinary lives”.

I have written “support” many times so far, but we believe that our work is not to support the children directly, but rather to create an environment in which they can lead ordinary lives. For children to become happy, their families need to be happy. For families to become happy, we need to help them with the things that they cannot do alone. Therefore, I believe that support which includes families is important. We do not think that our work is over when we have reached a certain point, and anything that beyond this is someone else’s job; we sometimes act as a job centre, and sometimes as an estate agent. This jack-of-all-trades is how we think of our role.

Our hopes for the Act on Children who need Constant Medical Care

During these eight years, the living environment on Miyakojima for children who need constant medical care has greatly changed. Until now, most families moved to big cities, where a suitable environment was in place, because they said that they could not live in the local community. Now, on the other hand, there are people who move to Miyakojima because we have put things in place. Since we started this work, there are no more families of children who need constant medical care moving away from the island. 

Turning now to the Act on Children who need Constant Medical Care, which came into force in September last year, this legislation has been evaluated as a breakthrough in terms of the responsibility of the national and local governments to support children needing medical care. However, I am forced to say that many problems still remain in practice.

For example, nurses are needed in order to accept such children, but there is a chronic shortage of nurses in the countryside, and there are almost no welfare nurses among them. Bringing substance to the Act on Children who need Constant Medical Care will depend on the cultivation of nurses who are able to respond to children needing such medical care, I believe.

Another issue is that the legislation shines a spotlight on the employment of families, but there is no mention of support for siblings, so I am afraid that discrepancies may arise among different local authorities.

Many family members and supporters are saying that they hope this legislation will lead to wider understanding of children needing constant medical care among local communities. However, in Okinawa Prefecture, debate has not even begun about the implementation of concrete measures, so it will depend on future moves.

My personal hope is that the Act on Children who need Constant Medical Care will be one of the catalysts for the world to start working to realise a society in which children needing constant medical care and their families can receive the appropriate support and lead fulfilling lives.