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 have had a gastrostomy.
The government aims to create a system for children to receive appropriate support across the country. The immediate challenges include allowing them to attend schools or daycare centers without the need for parental support.
The Department of Health, Labor and Welfare estimates that around 20,000 students aged 19 and under are staying at home, with an increasing trend.
People using ventilators need to have phlegm removed, while those who have had a gastrostomy need help with liquid food. Only certain people outside their family can provide this help.
In primary and secondary schools, parents and guardians are often asked to accompany their children to school, placing a heavy burden on the family. Many regions do not have daycare centers that can accommodate these children.
The new law stipulates that nurses and other medical workers must be sent to schools and daycares attended by children requiring medical assistance. People, including teachers and daycare staff, can also provide care if they are trained. The government and local agencies must quickly train workers capable of providing care.
One of the objectives enumerated by the new law 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 that they can continue working during this time, but too few facilities meet these needs. In addition, the number of children that these establishments can accommodate is limited, creating cases in which they can only attend a few days a week. Support must be provided so that operators can increase the number of staff. We would also like to see efforts to secure transportation such as school buses for the movement of children to facilities.
Families have apparently struggled even to know what kind of support they can receive locally. The new law provides for the creation of support centers through which prefectural governments can deal with family requests. We would like to see closer collaboration between related organizations such as those providing medical care, education and welfare.
There was one case where a hearing impaired child in need of medical care was able to attend a school for the deaf through the cooperation of related parties. The child would have learned sign language and would have become able to express his feelings.
The needs of those affected are diverse. The government and local organizations should prepare refined support measures so that the chances of children to grow up and their lives with their families are not diminished.