Abstract
Japan has established a unique medical and social care system for both children with chronic severe motor and intellectual disabilities (SMID) and their family members. Many kinds of specialist, including doctors (Pediatrician, Neurologist, Surgeon, Orthopedist, Rehabilitation, etc.), nurses, physical therapists, medical social workers, and special school teachers, are working with children with SMID. There are many special facilities, for example, special hospitals, special schools, or special day services or nursery systems for children with SMID. Consequently, the number of children with extreme SMID who have severe respiratory insufficiency (tracheostomy and/or ventilator care) and require tube feeding who stay at home is increasing in Japan. The medical and social care system for children with SMID aims to draw possibilities from them and to support them to keep their bodies and lives safe and stable, even if there is no cure. This system contains the character of palliative medicine for children with extreme SMID. Family members of children with SMID and many specialists working with such children should know each child's present condition precisely, and should accept their actual situation and natural course in the future. The most important purpose of this unique medical and social care is that children with SMID and their family members can live a satisfactory life with minimal pain or worry. I hope that they have no regrets about their lives. The length of a life is not so important. Extreme SMID and “brain death” are completely different concepts. I hope that we can create a safe and comfortable society for all individuals in the near future.
