Open Letter on the Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care, Addressed to the Prime Minister and the Minister of Health, Labour and Welfare

[Background information]
 Brief history of the social welfare system in Japan
    The social welfare system in Japan has traditionally been based on the "administrative assignment" system, in which the competent authorities decide what kinds of measure should be taken for those in need.
 Although the individuals concerned or their family members have had no choice under this system, it has had significance in a sense that necessary public assistance has been provided for them on the basis of the philosophy embodied in Article 25 of the Constitution of Japan, which states, "All people shall have the right to maintain the minimum standards of wholesome and cultured living". In accordance with this philosophy of the right to survival, basic systems and schemes for social welfare have been developed, including for persons with disabilities.
 For persons with severe disabilities, however, "administrative assignment" had meant placement in institutions, separated from the family and the community. Such a nature of the administrative assignment system has come to be seen as disregarding the wishes of disabled persons concerned and restricting their individual rights and freedoms. In particular, the 1970s witnessed the emergence of movements, initiated by disabled persons themselves, for independent social living. Consequently, some municipalities, especially in metropolitan areas such as Tokyo and Osaka, began to support independent living of disabled persons by introducing their own schemes, such as the Scheme of Home-Based Care Helpers For Persons With General Physical Disabilities.
 This trend has also been reflected in national policies, partly due to the virtual incapacity to build further residential institutions. For example, the Special Standards for Home-Based Care Fees was introduced into the Public Assistance Scheme, which became a foundation for independent living of persons with severe disabilities nationwide. More and more municipalities have begun to consider the schemes of home helper services, which had originally been contracted out to voluntary social welfare organizations, as part of public services. Recently, however, this trend has been reversed and these services tend to be contracted out to private entities again.

 The Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care
    Against these backgrounds, the Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care were proposed, as if it would better reflect the wishes of disabled persons themselves.
    The Scheme is founded on the philosophy of "contract-based" services, which was given a legal basis by the quick amendments to the Social Welfare Services Act in 2000. As the phrase "From Administrative Assignment to Contract-Based Services" illustrates well, its principle is that the individual should apply for a private service provider of their own choice, the latter entering into a contract for the service provision with the municipality of the user's residence. The costs for the service provision is covered both by the user, who should pay a prescribed proportion of the costs, and the municipality of the user's residence.
    However good the principle may sound, the Government evidently intends to abandon the constitutional philosophy of the people's right to survival by transferring all the responsibilities principally to disabled persons themselves and partially to municipalities of their residence. The actual purpose is to integrate home-based care for disabled persons into the Home-Based Care Insurance Scheme, which has been implemented for elderly persons and persons with scheduled chronic diseases. The supplementary benefits are provided as a transitional measure, since it is difficult to collect insurance contributions from persons who have lived with disabilities, especially severe disabilities. The fundamental contradiction of the scheme lies in the fact that it attempts to apply the market-oriented principles of competition, which are the basis of the contract-based service provision, to the people who are excluded from the competition itself.

 Open Letter on the Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care

 Addressed to:
 Prime Minister, Mr. Junichiro Koizumi,
 Minister of Health, Labor and Welfare, Mr. Tsutomu Sakaguchi

 As one of the persons affected, I would like to raise some questions about the Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care, to be introduced in April 2003. It is because the Scheme has many problems, without doubt, which is likely to cause critical situations not only for myself but also for many disabled persons as well as their families in Japan.
 Under the plausible phrase "From Administrative Assignment to Contract-Based Services", the Scheme aims to improve the quality of home-based care services for disabled persons by contracting them out to private entities and applying the principles of competition. The principle of voluntary contract with the user also has great appeal to the public.
 Actually, however, there are little disabled persons in need of care who can afford to pay for such expensive services. This means that, for most of them, it is almost impossible to pay for the costs not covered by the benefits without imposing burdens on their family members. For example, how can a disabled person like myself, who is virtually bedridden, needs 24-hour home-based care and lives only on pensions, live their own lives?
 Generally speaking, the family in Japan has less and less capacities to provide home-based care to their needy members, not only in urban cities but also in rural areas where nuclear families are more common. The Home-Based Care Insurance Scheme has brought about serious situations, in which, for example, elderly persons provide home-based care for their elderly spouses because of the incapacity to pay for the necessary services. These situations have not been improved yet, as you may be well aware.
 Under these conditions, how can the Scheme of Supplementary Benefits to Disabled Persons for Their Home-Based Care be effective in improving home-based care for disabled persons? Do you not think that the conditions would be far worse?
 There has been a steady and rapid increase in the number of the disabled persons who choose to lead independent living, even among those who need 24-hour home-based care. They themselves arrange for their own home-based care, by recruiting voluntary individual helpers, who may or may not receive small payment through different schemes, as well as by making use of public support services, such as the Scheme of Home-Based Care Helpers For Persons With General Physical Disabilities. Although the arrangements require enormous efforts, they enable the disabled persons to have enriched and broader social lives.
 The newly-introduced Scheme will have adverse consequences on these efforts made by disabled persons themselves, because it only pays for approved services providers, thus likely to exclude individual helpers recruited by disabled persons themselves, and because it places more financial burdens on disabled persons. The public authorities should complement the efforts of disabled persons themselves, rather than deprive them of spaces for these efforts for independent living.
 In other developed countries, more and more disabled persons, even with serious disabilities, lead independent living as a natural way of life. On the other hand, the present situation in our country may well jeopardize even the right to survival of disabled persons. This can be a "shame" for Japan, which calls itself a developed country.
    I am well aware of the fact that the central and local governments in Japan have hardly succeeded in restructuring their finances. I understand that the public authorities really wish to reduce unnecessary public expenditures as far as possible.
 At the same time, we trust in the Government that it will comply with the constitutional philosophies by respecting and ensuring fundamental human rights, including the right to survival, of each and every citizen. I do not believe that you will streamline necessary facilities and human resources at the cost of individuals' survival for short-term savings of expenditures.

 In this context, I humbly request you to clarify the following points.

1. I agree with many aspects of the privatization policies pursued by the Koizumi Government. In my opinion, however, the policies may not bring favourable consequences in the fields of health care and welfare. Is it not necessary to conduct more careful, concrete and detailed surveys and examinations?

2. I have one fundamental question: Do you think it is possible to ensure and sustain the philosophy of "the right to survival" enshrined in Article 25 of the Constitution of Japan only through the introduction of the principles of competition? Disabled persons have been excluded from the competition, being unable to earn sufficient incomes on their own. How can these disadvantages be remedied through the trade of services? Can home-based care services be provided on an adequate basis under the principles of competition?

3. The following questions concern some procedural aspects of the introduction of the new Scheme.

a. Why did you make such significant modifications to the present system without informing citizens of the deliberation process, as if it were a surprise attack?

b. When were these modifications made public? It is not sufficient only to provide explanations to those who will directly affected by the new scheme. When was a social consensus formed about it?

c. Why are you going to introduce such a significant institutional change without allowing disabled persons enough time to prepare for it? It is impossible for us to effectively deal with such an abrupt change. Since it is a matter of survival for us, it is essential to allow the persons concerned to have sufficient time to consider the proposal and prepare for the change. How do you think of this point?

 I would like to emphasize again that it is essential to have an adequate consensus among the public when you introduce such a fundamental change to a system. Needless to say, it is crucial to take what is called minorities' views into account in the consensus-building process.
 But for these processes, Japan may well be regarded as being dictatorial instead of being democratic. It would not be able to blame other states, such as North Korea or Iraq, for their being dictatorial.
 You might ask why we have not raise these issues earlier. It is because you have never informed us of the detail until now. We have come to grapple the whole picture by working hard to get the relevant information from various agencies. It is your fault that we had to express our views at this last stage.

    You must listen to the public in general, including disabled persons and other minorities, since the structural reform of the social welfare system affects each and every person, who can be disabled and become in need of home-based care at any time, due to an illness or accident or any other factor.
 The present reform will have adverse effects on all persons with disabilities. The consequences will be particularly serious for persons with severe physical disabilities, such as cerebral palsy (who need 24-hour home-based care), and persons with severe mental retardation, who will be forced to give up independent living. In fact, the present reform is a matter of survival for them, since it will make it difficult for them even to sustain their lives. They frequently say that the traditional "administrative assignment" system is far better than the envisaged one, because some progressive municipalities have made their best to improve the administration of the former system, which has led to quality independent living of many persons with disabilities.
 Over the decades, people with cerebral palsy and other forms of disabilities have made great efforts to lead happy and independent living and to create a culture of their own, sometimes by taking active part in social movements. This has been done in spite of the society's deep-rooted prejudice toward people with disabilities. I believe, therefore, that Japan should be proud of their efforts and continue to build on them.

 The new Scheme has many other problems that were not mentioned above. In particular, we are very concerned how individual helpers recruited by ourselves will be treated under the new Scheme. Although the Ministry of Health acknowledges the importance of this issue, it has not made clear what will happen to them. We do not believe that private entities or non-profit organizations can replace these individual helpers recruited by ourselves. In addition to this issue, we demand you to reconsider the introduction of qualifications for helpers, which will prevent us from recruiting individual helpers of our own choice.
 We strongly believe that the Government is responsible to guide and assist local municipalities in supporting independent living of people with disabilities, including through the provision of subsidies. Please do not cut off communication and interactions between people with disabilities and people without disabilities.

 We would like you to respond to the present open letter in a sincere manner, by JANUARY 15, 2003, through a channel as transparent as possible.

January 1, 2003

Shigeru Endo (a person with disabilities who is bedridden) ,
together with:
The group of his voluntary helpers ("Entoko")
Representative: Shigeru Endo
Helper: Ryouko Sato
    Miki Moriike
    Mitsuko Tsukimata

The film making and showing committee of "Entoko: the Film"

The promoter of the showing of "Entoko: the Film"

The members and supporters of "Care Seikatsu Club"