Survival prognosis of Japanese with severe motor and intellectual disabilities living in public and private institutions between 1961 and 2003.

BACKGROUND: Although the prognosis for survival in people with severe functional disabilities is a serious concern for their families and health care practitioners, there have been few reports on survival rates for this population. Every year, the Japanese Association of Welfare for Persons with Severe Motor and Intellectual Disability collects anonymous records of individual registrations and deaths from all private and public institutions, excepting national institutions. We used these data to estimate the prognosis for survival. METHODS: We reviewed the records of 3221 people with severe motor and intellectual disabilities (SMID); all subjects had lived in one of 119 public or private institutions in Japan between 1961 and 2003. Kaplan-Meier survival estimates were calculated according to disability type and birth year range. RESULTS: Of the 3221 persons, 2645 were alive and 576 had died. The survival rate at the age of 20 for all subjects was 79% (95% confidence interval, 78%-81%). Among people who were unable to sit, those with lower intelligence quotients had lower survival rates. CONCLUSIONS: The survival rate among people with SMID housed in public and private institutions in Japan was much worse than that of the general population, and has not improved since the 1960s.

[Social welfare for children with developmental disabilities in the 21st century].

For children with developmental disabilities in Japan, various social policies including education, medical care, pension and welfare have rapidly developed and prevailed during the last 50 years. The concept of living together with the disabled has been widely accepted. A high standard of social welfare has been established by virtue of high respect for human rights, progress in medicine and economic growth. Historically, the International Year for the Disabled played an important role in meeting the expectation of the disabled and their families. Amendment of the legal system has realized normalization and social independence. Based on this historical background, there are in the 21st century new trends of development in the education, welfare and social life of the disabled, aiming at a better society for all the people.