Children who need constant medical care and their families have launched Japan’s first national organization that will ask the government to improve its assistance for them.
The organization will submit proposals to central and local governments. It will also organize exchange events for children and their families and work to raise awareness.
Medical advances have saved the lives of more children than in the past. But it has also led to a growing number of children requiring constant medical procedures in their daily lives, such as suctioning of phlegm and support with ventilators.
A government research group estimates that the country currently has more than 19,000 such children. In many parts of the country, they have not had the right to receive sufficient support in their schooling and daily life.
An online ceremony was held on Sunday to mark the founding of the national organization, which is made up of children and adults who need constant medical care and their families and supporters.
A participant in the ceremony said that the organization will link activities that have been carried out separately in local areas. Another said he would ask for more assistance to improve the welfare of children.
Representative Miyazoe Kazuho has a 9-year-old son who needs a ventilator.
She said the organization will be able to convey to society the voice of families busy caring for their children and distraught to whom they should explain their problems to change their situation.
Miyazoe said the organization will help achieve better living conditions for children and their families.