THE JAPAN NEWS



 

A group of Tokyo mothers whose children have severe mental or physical handicaps requiring medical care, such as the use of an artificial respirator, have published a guidebook about improving the home life of children with disabilities and their families.

“Ouchi de kurasu guidebook Q&A for children with diseases and their families” was released by Medicus Shuppan Publishers Co. in December last year. It was put together by members of the support group Mikangumi who hope it will be read by people with similar concerns regarding child care. The group operates mainly in Suginami Ward, Tokyo.

Mikangumi was established in April 2014 by eight pairs of parents and children who belonged to the Mikan (mandarin orange) class of the ward-run Tanpopo-en, also known as the Kodomo Hattatsu Center, a facility that accepts preschool children with severe disabilities. Through the group’s study sessions and interactive events, Mikangumi members found that many parental guardians of severely disabled children experience hardship because they are unsure what to do after their children return home from the hospital.

In March 2015, Mikangumi members made a brochure titled “Ouchi gurashi anshin book” (A book for living at home safely) based on their own experiences and their interviews with the center.

The brochure became popular through social networking services and word of mouth, and the group has received inquiries about it from across the nation. A total of 3,000 copies have been sold, including additional printings.

The brochure has been used in training sessions for new staff at the center and received positive reviews from people in the medical and nursing care industries. As a result, it was re-edited and published as a guidebook under the supervision of pediatricians and other experts.

For the guidebook, the contents were improved and important points — such as how to prepare for living at home or in local communities, how to use various services for that purpose, and the future of the education and welfare system — are presented with cute illustrations. The concerns of related parties are also addressed in a question-and-answer format.

Mikangumi representative Kaori Kawata, 41, said, “We hope the guidebook will help those concerned live happily at home or in local communities by providing useful information.”

The guidebook costs ¥2,400 plus tax and is available at major bookstores in Tokyo or through the internet. For more information, call the center at (03) 5317-5661 (Japanese only).