June 9, 2019

The number of children with chronic health conditions is growing. However, the current situation of short-stay facilities supporting these children and their parents is dismal.

Among children and young people aged between 0 and 19, around 19,000 rely on a ventilator, need to suction their throat to remove phlegm, use a feeding tube, or receive other medical treatments on an around-the-clock basis. The number of such cases doubled in the last decade. Their families are instructed to provide these types of care at home 24/7.

Parents of children with life-limiting conditions (LTC) cannot take even a few days of rest because there are few accommodation facilities with professional staff. “Momiji House” in Tokyo is one such facilities. It was established in April 2016 as part of the National Center for Child Health and Development with the aim of developing a support system for children with LTC and their families so that parents can occasionally leave their kids at the facility for a few days so they can rest and recuperate and the children can engage in various fun activities there.

“Momiji House” has eleven beds and around 500 registered users who mainly come from Tokyo and nearby prefectures. It receives 80-100 applications for stays every month, but has to reject 40 or more due to limited capacity. Currently, families with children with chronic health conditions have to wait at least three years to obtain a registration certification with a facility.

Despite this situation, facilities providing similar services are few in number. Uchida Katsuyasu of Momiji House pointed out that this is because accommodation facilities for children with LTC cannot make ends meet with disability welfare service fees and public subsidies alone.

Momiji House in 2018 suffered a loss of 20 million yen and relies on donations from individuals and companies. Uchida said that the number of facilities of this kind should be increased, and stressed that it is necessary to raise the state remuneration for disability welfare services so that stable operation of such facilities will be possible.

The National Center for Child Health and Development has submitted a petition to the Health Ministry to call for a higher state remuneration for services provided by facilities like “Momiji House”. A similar demand was also made by the Japan Medical Association.