Japan is set to enact a new law supporting children in need of medical care in their daily lives, including those who use ventilators or who have undergone gastrostomies.
The government aims to create a system enabling the children to receive appropriate support anywhere in the country. Immediate challenges include making it possible for them to attend schools or day care facilities without the need for parental accompaniment.
The Ministry of Health, Labor and Welfare estimates that about 20,000 students aged 19 or younger remain at home, with the figure trending upward.
People using ventilators need to have phlegm removed, while those who have had gastrostomies need assistance taking liquid food. Only certain people outside their families can provide this assistance.
At elementary and junior high schools, parents and guardians are often asked to accompany their children to school, placing a heavy burden on the family. Quite a few areas have no day care facilities that can accept these children.
The new law stipulates for nurses and other medical workers to be dispatched to schools and day care centers attended by children needing medical assistance. People including teachers and day care staff can also handle care if trained to. The government and local bodies must quickly train workers able to handle the care.
One of the new law's listed aims was to avoid situations where the burden of care forces families to leave their jobs. It is important to provide day services that people can use after school hours so they can keep working during that time, but too few facilities meet such needs. Furthermore, the number of children these facilities can accept is limited, creating cases in which they can attend only a few days a week. Support needs to be provided so operators can increase staff numbers. We would also like to see efforts to secure transportation such as school buses for children's commutes to the facilities.
Families have apparently struggled even to find out what kind of support they can receive locally. The new law includes the establishment of support centers through which prefectural governments can handle families' inquiries. We would like to see stronger collaboration between related bodies such as those providing medical care, education and welfare.
There was one case in which a hearing-impaired child in need of medical care was able to attend a school for the deaf thanks to related parties' cooperation. The child reportedly learned sign language and became able to express their feelings.
The needs of those involved are diverse. The government and local bodies should prepare fine-tuned support measures so that children's opportunities to grow, and their lives with their families, are not diminished.