Kengo Nishimaki
Director, National Rehabilitation Center for Persons with Disabilities Hospital
Director, Information and Support Center for Persons with Developmental Disorders

１. How developmental disabilities became the object of disability welfare:

For a long time, persons with disabilities in Japan were legally protected and sheltered by safety measures. It was not until the revision of the Basic Act for Persons with Disabilities in 1993 that persons with disabilities were able to receive support from the government for the dual purpose of social independence and social participation. After the International Year of Disabled Persons (1981), the idea of normalization spread in Japan, and the trend of moving persons with disabilities “from institutions to home” was fostered. In 1990, eight welfare-related laws were revised, making home welfare services statutory. For the elderly, the Long-Term Care Insurance Act of 1996 was meant to systematize new long-term care services and create a new social insurance system. In the case of welfare for persons with disabilities, a shift from a system of safety measures to a system of contracts for the use of services was made following the basic structural reform of social welfare. In 2005, the Services and Support Act for Persons with Disabilities (currently, the Act Providing Comprehensive Support for the Daily Life and Life in Society for Persons with Disabilities) was enacted to create a mechanism to provide welfare services and publicly funded medical care under one Act, which used to be provided for under the Act for the Welfare of Persons with Physical Disabilities, the Act for the Welfare of Persons with Intellectual Disabilities, the Act for the Mental Health and Welfare of Persons with Mental Disorders, and the Child Welfare Act.

One year before that, in 2004, the Act on the Support for Persons with Developmental Disabilities was enacted. For this reason, developmental disabilities were not included in the various laws related to the welfare of persons with disabilities. The Basic Act for Persons with Disabilities, the Act to Eliminate Discrimination against Persons with Disabilities, and other laws were revised year by year, and for the further enhancement of support for persons with developmental disabilities, the Act on the Support for Persons with Developmental Disabilities was revised in 2016.

Developmental disabilities are not only late in being recognized as mental disorders in psychiatric medicine, but also their policies are distinct from those of physical, intellectual, and mental disabilities. They do not have residential facilities as stipulated by law, and their need for welfare services are high in the fields of employment, support for independence and disability pensions. In child development, the main support is for infants and toddlers, while school-aged children are mainly under special support education. The onset of the symptoms depends on the variable conditions at home, school, and work. Furthermore, the diagnosis varies depending on the level of distress on the part of persons with disabilities and their guardians, which makes it difficult to handle only by applying the Child Welfare Act and the Act on Providing Comprehensive Support for the Daily Life and Life in Society of Persons with Disabilities. Self-reliance support facilities for children and psychological treatment facilities for children are also important residential facilities in relation to developmental disabilities. (They are social care facilities for delinquency and one for emotional disorders, respectively.)

２. What is a developmental disability?

In Japan, the term “developmental disability” is often used in the context of the Act on the Support for Persons with Developmental Disabilities, rather than referring to neurodevelopmental disorders of the International Classification of Diseases, 11th Revision (ICD-11) or the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition in psychiatry. Developmental disabilities are currently defined in accordance with ICD-10. They are developmental disorders, such as autism, Asperger’s syndrome and other pervasive developmental disorders, and disorders of brain function, such as learning disabilities and attention deficit hyperactivity disorder, that usually manifest themselves at a younger age. Persons with developmental disabilities are defined as those with developmental disorders that limit daily or social life due to disabilities and social barriers (Article 2 of the Act). This will be revised soon.

Advances in psychiatry have revealed some of the causes of the difficulties of persons with developmental disabilities in living their lives. It is important to clarify the responsibilities of the national and local governments for early detection and seamless provision of support to enable them to lead their daily and social lives with dignity as individuals. Furthermore, it is important to provide support for their independence and social participation in all areas of their lives, which contributes to the realization of a society in which people with developmental disabilities can live together with others without discrimination caused by their disabilities (removal of social barriers) and with mutual respect for their personality and individuality (support for decision-making) (the purpose and philosophy of the law).

It is important to note that developmental disabilities affect all generations of people and cause them to have difficulties in life. There are some types of people with developmental disabilities who receive medical care and education at an early stage, after which they grow up normally: those who receive special support education in elementary and junior high schools and manage to find employment; those who stop attending school in elementary and junior high schools and are able to correct their direction in high school with the help of their family and medical care; those who are maladjusted in college and are unable to find employment; those who are maladjusted due to changes in the work environment; and those who are unable to live with their spouses after retirement. It has been known that some people who are having “80-50 problems” are diagnosed as having developmental disabilities. Even in the absence of the laws, some people have been able to overcome their difficulties in life and improve their lives on their own. We would first like to promote public understanding and awareness that there is a group of disorders called neurodevelopmental disorders in the field of mental disorders (intellectual disabilities are now also included in this group), which cannot be seen from their appearance with the same diagnostic criteria for both children and adults.

３. The journey towards building the support systems that are truly needed for persons with developmental disabilities

According to a survey conducted in 2023 by the Ministry of Education, Culture, Sports, Science and Technology (MEXT), 8.8% of children without intellectual developmental delays but with significant learning or behavioral difficulties might have so-called developmental disabilities. There is this increasing trend from the result of the survey conducted every 10 years. Some researchers and experts point out that the percentage is as high as 10%. Although awareness of the term “developmental disabilities” in society has increased over the past ten years, it is still far from being well understood.

I recently had an opportunity to speak with a family who have a child with a developmental disability. They told us that their child has been diagnosed as such and has already obtained a certificate of disability. He has graduated from high school and has enrolled in a vocational school. So, the family visited the school to explain about the disability and asked for some consideration. When the family asked for necessary support, citing “reasonable accommodation” as stipulated in the Act to Eliminate Discrimination against Persons with Disabilities, the school personnel replied, “Do you mean to say you want us to give your child special treatment?” There are still countless stories of this kind.

While the revision of the law contains many wonderful contents in terms of philosophy, I believe that a considerable amount of time and effort will still be required to realize what is written. Furthermore, unlike other disabilities, it is difficult to deal with the situation only in the field of disability welfare. When conducting individual social work, multidisciplinary cooperation is required, taking into consideration a wide range of fields, such as the judicial field, including the police, business, maternal and child health care, etc.

４. Endeavor of the National Rehabilitation Center for Persons with Disabilities to cope with developmental disabilities

The Information and Support Center for Persons with Developmental Disorders, one of the organizations of the National Rehabilitation Center for Persons with Disabilities (NRCD), plays a part as a national institution. In particular, (1) dissemination and awareness-raising to the public (Article 21 and 22 of the Act) and (2) securing human resources with expertise (Article 23 of the Act) are important roles the government plays. As for “dissemination and awareness-raising to the public,” in addition to the Information and Support Center for Persons with Developmental Disorders, the Center for Promoting Education for Persons with Developmental Disabilities at the National Institute of Special Needs Education (NISE) and the Support Centers for Persons with Developmental Disabilities in each prefecture play a major role.

In providing support to children with disabilities, including developmental disabilities, seamless cooperation transcending the boundaries of vertical administrative structure is essential. In particular, with regard to the dynamic between education and welfare, it has been pointed out that there is a need to promote mutual understanding between schools and child development support facilities and after-school day care service facilities, as well as to share information, together with the parents. Based on these issues, in December 2017, the Ministry of Education, Culture, Sports, Science and Technology and the Ministry of Health, Labour and Welfare launched a project team consisting of the Senior Vice-Minister of Health, Labour and Welfare and the Senior Vice-Minister of Education, Culture, Sports, Science and Technology in order to further promote cooperation between the boards of education and welfare departments in each municipality and to study ways of cooperation and support for persons with disabilities and their parents. On March 29, 2018, the team compiled a report on the “Triangle” project showing the cooperation between families, education, and welfare. According to the report, it was decided that the websites of the NISE and NRCD should be linked so that parents and others can easily utilize them, clarify the expertise that supporters should acquire in the fields of education and welfare under the collaboration of the four parties, and consider the mechanisms of training for those who will be in leadership positions in each municipality, and the various approaches to disseminate outcomes in the fields of education and welfare. On this occasion, the information provision system has been drastically reviewed, web conferencing has been utilized, servers have been shifted to the cloud, and a new comprehensive portal site has been built on the cloud to strengthen the national government’s functions related to dissemination and awareness-raising to the public, as stipulated in Article 21 and 22 (1) of the Act. While utilizing information from the current website, we have revised the articles on health/medical care, education, welfare, and labor, as required by the report.

Moreover, as the role of the national government is to secure human resources with expertise, we created e-learning contents with 14 items and 57 videos. They are to contribute to improving expertise that education professionals and welfare professionals should commonly acquire when they work together. They were created as a training curriculum for the development of human resources to support persons with developmental disabilities relative to the dynamic between education and welfare, which was discussed in the “Triangle” project. The videos cannot be downloaded to prevent their dissemination to an unspecified number of people, but they are currently available free of charge to anyone who wishes to view them. Other materials are downloadable after viewing them. They can be used for personal study or training sessions.

Finally, I would like to introduce the activities of the Department of Education for Children with Intellectual Disabilities at NRCD. The department trains professionals with both theory and practical skills in supporting persons with developmental and intellectual disabilities. The period of study is one year. The history of the Department can be traced back to the Support Staff’s Training Institute attached to the National Chichibu-Gakuen Institute for Children with Intellectual Disabilities, which opened in 1963. In addition to the staff of the Information and Support Center for Persons with Developmental Disorders, the staff of the Nozomi no Sono (National Center for Persons with Severe Intellectual Disabilities) also serve as instructors for the Department of Support Work for Children with Intellectual Disabilities. We are working together. Seminars for supporters hosted by the Information and Support Center for Persons with Developmental Disorders are held every year. Taking advantage of the outbreak of COVID-19, we have switched all the seminars to webcasting. The number of participants exceeds 1,000 each time. Utilizing the useful videos accumulated through these seminars, in FY2022 we started a special short-term multidisciplinary training program by using the allowable number of participants for the Department of Education for Children with Intellectual Disabilities. This training is designed for mid-career staff (childcare workers, teachers, public health nurses, support workers, counselors, and other professionals with at least three years of experience) who can handle difficult cases, such as bullying, chronic absence and withdrawal, child abuse, poverty and isolation, and delinquency, in order to help them become leaders of multidisciplinary cooperation. The contents of the training is to develop human resources who can contribute to administrative policies through case studies to share the significance and issues of multidisciplinary collaboration and find solutions to problems when building a network for effective multidisciplinary collaboration. Lecturers were provided by National Chichibu Gakuen, National Musashino Gakuin, and National Kinugawa Gakuin, in addition to the NRCD staff. More than lectures by well-known instructors from the Department of Education for Children with Intellectual Disabilities, the aforementioned instructors created new videos for training. All lectures and case studies are available on the web.

At NRCD, each department is working on developmental disabilities. Currently, we have established a liaison conference of departments related to developmental disabilities to share information. From now on, we in NRCD as a whole, would like to further strengthen our cooperation and support for people with developmental disabilities.

[References]
Kengo Nishimaki: “What are the public health challenges of people with developmental disabilities?” Public Health 82 (5), 2018