I wrote about the transition of the disability movement in Japan in Section [P], and the conflicting parties in the movement in Section [Q]. One important aspect of the movement was critique of the modern society and culture, denouncing discrimination and criticizing policies. The movement questioned the value of such keywords surrounding the existence of people with disabilities as "curing" and "being able". At the same time, the same people with disabilities who were involved in the movement needed to lead their daily lives in the society they were trying to change. Ideally, there should be no fundamental conflict between criticizing society and living in it. In reality, however, the direction of the movement and the claims to be made were the subject of numerous discussions. I shall not state them in detail here and will merely briefly introduce what the disability movement in Japan managed to achieve and create over the years. There are two main achievements. One is a public care system providing people with disabilities with personal assistance up to 24 hours per day. Another is that the large part of this service is provided by organizations run by people with disabilities themselves.
The disability movement in Japan has been mainly led by people with severe disabilities, such as those with cerebral palsy, and these people needed almost constant personal assistance (PA = personal assistance / personal assistant(s))in their daily lives. The problem they had to solve is how they can obtain the assistance they require to live independently in a community, in other words, assistance other than from their families or institutions. In the beginning of the movement, this assistance was shouldered by college students and other people who were sympathetic to the movement, and was (and only could be at the time) provided on a volunteer basis. But this assistance was by no means reliable. Also, as long as such duties are only performed by a limited number of supporters and volunteers, the rest of the public or the society at large, which is the real culprit that makes lives of those with disabilities difficult, is exempted from responsibility to take care of them.
Therefore, the movement claimed that the responsibility of guaranteeing the livelihood of people with disabilities including provision of proper PA shall be shouldered by the society in general. At the same time, it stated that people with disabilities should be the masters of their own lives, and their lives should not be managed or controlled by someone else. This was only natural, since the movement started as a critique of the system of management imposed on them by institutions. Thus, the movement started to look for the best system that would ensure that their livelihood is guaranteed by the society, but in such a way that they could still be in control of their own lives.
From the 1970s to the 1990s, there were three types of public systems that provided support to people with disabilities.
There was a helper-dispatch system for people with disabilities, which, according to the national law, had to be implemented by the municipal governments (1). However, this system could only provide helpers for two to four hours per week, which for people with severe disabilities living away from their families or institutions was far too little. Another problem of the system was that people with disabilities were not allowed to choose helpers.
Therefore, while requesting the expansion of this national system, people with disabilities living in Tokyo (2) demanded the municipal government of Tokyo to provide a different system of support on the local level. Some who had previously lived in the Tokyo Metropolitan Fuchu Nursing Center and others who, though connected to them, were involved in their own social activities, continued negotiations with Tokyo Metropolitan government and finally succeeded in establishing a system, where the municipal government pays salaries of personal assistants chosen by people with disabilities themselves. This system was legally adopted in 1973 and implemented in 197401.
Also, in response to demands of people with disabilities, the Ministry of Health and Welfare (today's Ministry of Health, Labour and Welfare) allowed application of special standards that meant a monetary addition for personal assistance provided by non-family members (3). This system has been implemented since 1975. According to this system, money is paid directly to the user of the service (the person with disability), in the form of direct payment described in Section [S]02.
The systems as those described above were available only to a limited number of people in Tokyo at first. The subsequent establishment of the National Alliance of Disabled People Liberation Movement (Zenshoren) in 1976 served as a trigger for expansion of these public assistant systems to the national level. This alliance was formed to strengthen the forces of the movement for social benefits at large and individual single-issue movements scattered at the time all over Japan and struggling in the areas of transportation, education and employment, including the movement of Aoi Shiba no Kai described in [P]. The alliance aimed at combining them into a single force that would help overcome the limits of individual movements. Here the issue of daily lives was positioned as one of the utmost importance. And at the founding conference, those who had shouldered the struggle at the Fuchu Nursing Center, those who were engaged in court cases hastened to report the present situation regarding the daily lives of people with disabilities and the process of the movement, discussing the course of action to be taken in the future and bringing up the issues to be addressed. At the same founding conference, they pointed out that those with disabilities are barely surviving only due to their own individual efforts, and stressed the importance of creation of self-run personal assistant dispatch centers.
In response to this move, a number of people with disabilities in various prefectures also demanded social benefits to cover the fees of personal attendants other than family members and application of special standards for accounting, and some of their demands were met. In some other areas, people with disabilities made demands to their municipal governments and succeeded in having the latter to provide public assistance at the municipal level to support people with disabilities. Thus, as a result of the long negotiations with the state and municipal governments, in certain parts of Tokyo by combining the three public systems described above people with disabilities became able to receive daily 24-hour assistance from 199303. And from that time onward assistant systems providing such long-time support gradually began to spread to other areas of Japan.
Starting from the 1970s, a number of people with severe disabilities chose to live independently from their families or institutions, supported by personal assistance of students or volunteers, and in some areas the situation is same even now. As the institutional and economical benefit systems like those mentioned above gradually spread, it became possible for some volunteers to receive certain fees for the assistance they provided to people with disabilities. And some personal assistants could even make their living by this work alone.
However, since at first the amount of money provided for assistance was small, various arrangements have been devised to manage within the limited budget, for example providing enough money to live on to assistants who provided long hours of assistance, supporting not only the daily lives of those with disabilities but often even their movement at large, while others were not paid at all. In such cases, small groups of people (or, sometimes, just one person) with disabilities and their (or her) supporters were created to decide various matters and promote communication among the members. Some of such groups are still functioning fairly successfully, but some have ceased to exist because of problems in the relationships among the members or due to financial problems.
To address this problem, independent living centers began their full-scale work as mediators between people with disabilities and their personal assistants. The term "Independent Living Center" (ILC, or CIL = Center for Independent Living ) became known in Japan after seminars with leaders of the American Independent Living Movement were held in the beginning of 1980s, and some number of organizations began to use that name. Still "Human Care Association" (http://www.humancare1986.jp/english.html) established in 1986 in Hachioji-shi, Tokyo, was the first full-scale organization, in which mediating between the personal assistants and the users of their services was one of the major components of the activities, on par with advocacy of rights and Independent Living Programs. It is often mentioned that independent living centers in the US provide information to registered users and personal assistants but do not engage in anything else. Japanese independent living centers, on the other hand, actively engage in such activities. The number of independent living centers has gradually increased in Japan, and a national organization called the Japan Council of Independent Living Centers (JIL) was established in 1991.
The number of independent living centers increased and the scale of their activities expanded, partly due to financial support provided for their activities by some municipal governments04. However, over the years passed, the government support has not shown any qualitative or quantitative progress. Rather, individuals used independent living centers to obtain any public services available at the time and centers received mediator's fees. Another reason, which contributed to expansion of independent living centers, was the reforms of the system made after 2000, which I shall describe later, which enabled ILCs to gain certain profits from personal assistant dispatch business. That reform made it possible for some organizations to provide services to people with severe disabilities with communicative impairments, services, which other organizations and private enterprises hesitated to handle. Independent living centers made profit by providing such services and used the funds thus gained for their work on advocating rights and other activities, by which it was difficult (or, in case of some areas, impossible) to obtain funds. In cases of some independent living centers, the organization's manager and its sole user is the same person. In fact, this mode of operation is very close to the system where users receive public benefits to hire and manage their personal assistants.
This way, the disability movement in Japan was driven forth by a combination of the movement demanding the government to pay the fees of personal assistants since the 1970s on the one hand, and the activities that surged since the middle of the 1980s and which revolved around establishment of organizations run by people with disabilities themselves that enabled the users of such organizations to receive quality services on the other05.
As a result, the budget allocated for these services was increased. Of course, from the point of view of the users it had never been seen as sufficient and they often claimed that the budget was far too small. This is only natural. However, the government bodies, which tried to hold down the expansion of the social security benefits and social welfare in the age of "aging society", or to reduce the governmental expenses in general, tried to limit the budget allocated to people with disabilities. This brought certain people and organizations that had been leading these activities, though they had been but a minority in the disability movement at large, to the front line of the struggle against and negotiations with the government since the 2000s06. This trend becomes especially prominent from around 2000.
The Public Long-Term Care Insurance system was adopted in 2000. This insurance system mainly targeted the elderly of 65 years old and above, but there were attempts to change it so it would also cover people with disabilities, including those under 65. However, people with disabilities strongly opposed. The reason for it was that if that system was used to obtain personal assistance by a person with a disability living independently, it would merely cover a small part of assistance provided by persons other than the family, and though there were several types of services, if the person was to use home-visit assistance only, even for those with severe disabilities the system did not offer more than two to three hours of assistance per day. For that reason people opposed to the plan to cover them by this insurance system07. And at that time, though not because of their objections, the plan was dropped.
The public support system for (not elderly) people with disabilities was changed to "public support payment system" in April 2003. This system, while leaving users some freedom to still receive direct payments, fundamentally adopted the method where the fees were to be paid to the agency providing the service. This new system did not change much in the areas, where people with disabilities had already organized groups to provide services for them, and where contact-based relationships had already been established between the users and the personal assistants, with the costs paid by the public budget. Thus, the new system did not aim at a quantitative increase of the services, and the actual form of its implementation was left for municipal governments to handle. Still, the system showed that the services, which up to that time were available in limited areas only, can actually be made available for everyone. It showed to many people that the system does exist and is usable. And for that reason, in areas, where only a feeble system of support had existed before, the level of services provided increased, though not very much, as it became easier to organize and manage organizations providing services. It was expected that in the areas, where the system is employed, the number of users as well as the budget used will increase, and both did in fact increase. This was very much expected in the Ministry of Health, Labour and Welfare, so the Ministry tried to stipulate the limit for the service in January 2003, just before the new system was announced. However, people with disabilities strongly protested against it and the Ministry failed.
Both the number of users and the amount of services supplied thus increased, and the expenditure exceeded the budget. It was a good thing, and the fact that the budget was exceeded simply means that the estimate was wrong. However, for some this development was a problem. The institution that supervised the system was the Ministry of Health, Labour and Welfare, and though the workers there did not particularly want to reduce the amount of services provided, they were under constant pressure from the government and the Ministry of Finance to enact their policies within the limited budged.
The Ministry of Health, Labour and Welfare announced that it is financially impossible to continue in the status quo, and a (new) proposal to integrate services for people with disabilities within the public "Long-term Care Insurance" system was presented. One arguments given at the time was that if people with disabilities are to be covered by the Long-term Care Insurance system, there will be no reason to worry, since it is an independent financial resource. Another is that people should take advantage of the Long-term Care Insurance system because other systems shall remain, without being absorbed by or integrated into the new one. This issue was brought to public's attention in the fall of 2003, and people with disabilities had to deal with this "integration proposal" for some time after that. For the time being the proposal was shelved - partly due to the protests of people with disabilities, but not entirely. The main reasons were quite different, one of them being the concern in the financial circles, where worries about the costs of the insurance were strongly voiced.
The negotiations between the government and people with disabilities continued, and, in the end, the government overcame the opposition and the Services and Supports for Persons with Disabilities Act was established in April, 2006. This new system tried to curb the increases in both services and governmental expenses by making the users pay 10 per cent of any service received. Strong protests against the system started started to appear, pointing out that it aggravates the conditions for people with disabilities. All around the country people went to courts claiming the Act to be unconstitutional. In 2009, there was a change of government and the Democratic Party of Japan, which became the ruling party, announced their plan to abrogate the law. The suits were dropped and many meetings between the government and the representatives of organizations of people with disabilities were held. At this point it is difficult to predict how the situation will develop in the future and it is too early to take an optimistic view.
As can be seen from the above, the situation for people with disabilities is difficult in Japan (though perhaps not more difficult than it is abroad). Still, we can say that what we see now is a "counter-reaction" to what the disability movement managed to achieve during the last four decades or so. I do not think that there is any data or scientific papers that would show the actual achievements of systems of personal assistance around the world, but even in the Scandinavian countries, which are said to have and actually do have a very advanced social service (and many Japanese activists, who were trying to promote social security and welfare services, were learning from the systems and practices of the Scandinavian countries) are reducing services for ordinary people with disabilities. Also, voluntary suspension of life-sustaining treatment based on the patient's "own will" is also spreading. In that light I would like to stress that the significance of the achievement of the Japanese disability movement, which has always been based on the claim that even those with very severe disabilities have a right to live, cannot be underestimated.
How should we conceptualize the problem of limited resources, which always comes up whenever we try to deal with the main issue of right to live? I shall deal with this problem elsewhere. But, in short, I would say that there are resources and there always will be. And the fact that they seem limited is because since the 1980s those, whose duty was to promote social security and social welfare - systems that should be shouldered by everyone equally - envisaged them merely as systems based on the level of income or consumption similar to the system of insurance and promoted them in this direction08.