Thirty years of experience gained by the medical professionals in these special hospitals and wards have provided a great deal of medical knowledge and have advanced care techniques for children and adults with severe motor and intellectual disabilities. Indeed, this has been reflected in a decreased mortality rate, now 1% to 2% annually, and in the increased life expectation of people with severe motor and intellectual disabilities. Furthermore, the knowledge gained from the accumulated experience in the special hospitals has benefited the care and support of people with severe motor and intellectual disabilities who live at home, and are in school or in other places in the community.
Some epidemiological studies suggest that in Japan there are approximately 30,000 people with severe motor and intellectual disabilities, of whom 20,000 live at home. Many special hospitals for people with severe motor and intellectual disabilities have accepted persons who usually live at home for short-term in-hospital stays in order to meet the needs and requests of their parents. In the last five years,day care facilities for adults with severe motor and intellectual disabilities have been developed, either affiliated with the hospital-homes or with institutions for people with physical disabilities. In 1996, the Ministry of Health and Welfare announced that the number of day care facilities for people with severe motor and intellectual disabilities should be increased from 30 in 1996 to 300 by 2002.
Recent advances in life-saving techniques have resulted in an increase in the prevalence of infants and children with severe disabilities who need frequent and continuing medical management to maintain their lives, such as airway cleaning, oxygen inhalation, and tube feeding. Many of them have severe motor and intellectual disabilities, that is to say, ultra-severe motor and intellectual disabilities, and others have progressive neurological or movement disorders not necessarily associated with intellectual impairments. Most of them stay in neonatal intensive care units or on pediatric wards, or in some of the special hospitals. A few of them live at home, receiving school education. Nowadays, a topic under active discussion is who should manage medical services for these children in school, and how these services should be managed, if the parents are not responsible.
C. Early Intervention
1. Toward the Integration of the Three Legally Established Kinds of Day Care Facilities:Plan for a Development Support Center
The first meeting of the Discussion Group on Three Kinds of Day Care Facilities was held in Atami in 1994. This was a voluntary meeting attended by representatives from all over Japan of the three kinds of day care facilities that have been established legally. Since that time, there have been discussions about a plan for a "development support center", maintaining communication with the Central Child Welfare Council and the Japanese Association for the Care and Training of the Mentally Retarded. Such a program would greatly change the system of placement according to type of disability established under the current law. The background of this movement includes attempts to correct inequities among places and a maldistribution of service agencies and early intervention programs, and to create a system in which total services for children are more accessible and are available according to the consumer's choice and on the consumer's initiative, regardless of the type of disability. A tentative plan for a development support center was completed at the 11th meeting of the Discussion Group in Nagoya in January, 1996,and was immediately submitted to the Disability Welfare Section of the Ministry of Health and Welfare.
One development support center should serve a catchment area that has 200,000 to 300,000residents. A total of 400 to 600 such centers are expected to be established in Japan. The role of these centers, which presupposes cooperation with relevant local agencies, is to provide early support for all infants and their families who need the services. A center would have about fifty medical and welfare personnel on staff, including doctors, medical nurses or public health nurses, occupational therapists,physical therapists, speech therapists, psychologists, case workers, dietitians, teaching nurses, child instructors, additional nursery teachers for integrated child care at local child care facilities, and so on, who would serve the families whether or not the infants have developmental disabilities, and whether they are
