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Disability Movement / Studies in Japan 4: Notes on Direct Payments

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Shinya Tateiwa August 19, 2010

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translation by Midori Hiraga
proofread by Yura Okamoto


A. Situation in Japan š01

1) The system of payment of additional fees for care under Livelihood Protection Law that was established as a result of demands made by Japanese disabled movement since the 1970s is done in the form of direct payment. This system, however, is only available to the low income bracketš02.
2) Mainly after 1990s, the discussion regarding direct payments surfaced in Japan also, and a part of the disability movement sees the system in a positive light. For example, the plan created by Human Care Association in 1994 (and the author was involved in its creation) also treated it positivelyš03.

B. Discussion regarding Points
of Direct Payment System seen as Beneficial (1)

1) There is an opinion that under the system of direct payment each user becomes an employer and can thus use PAs (personal assistants) most efficiently. We can readily agree that users in fact can gain more control of the situation when they are employers, and that such a position works to their advantage.
2) However, if the claim is that the control is given to the user only because she is in possession of the financial resource, this claim is highly problematic, since it is ultimately the government that supplies the resource, which originally comes from tax payers. Therefore, if the claim is followed to the letter, the might well be that the power to control the resource lays in the hands of the governmental entities and tax payers, who are the original owners of the resource. This can easily lead to less respect being given to users' decisions. It is thus better not to claim that users can control PAs BECAUSE they possess the resource to pay fee to them, but instead push forth the argument that users have the power to control PAs no matter whom the resource (money distributed to them in the market) is attributed toš04.
3) Nevertheless, as long as the point 2) is confirmed and agreed upon by all, it is in fact beneficial for users if a system
based on individual contracts allowing them to choose PAs and have the latter provide services is adopted.
4) However, the system of direct payments is not the only way to achieve the conditions stated in 3). The same can be achieved if the government pays the fees to the PAs chosen and contracted by the users.

C. 
Discussion regarding Points of Direct Payment System seen as Beneficial (2)

1) Another argument is that the benefit of direct payment is that when users hire PAs and manage them, the users can earn an income. The same is mentioned in the work of Prideaux [2009] and this argument does seem feasible.
2) However, the counterargument would be that the number of people with disabilities who can in fact play such role of employers is
limited
. The answer to that would be that the system does not have to be used by all - it surely should by used by those who want to. That is also acceptable. But for further discussion we should remember that not all people with disabilities can take the advantage of this aspect of the direct payment system.
3) Let us now look into the situation of those who can hire and manage PAs. Though they can earn an income by managing PAs for a group of users, can they earn enough to sustain themselves by merely managing just the PAs they need themselves? Probably, no. Naturally, the system of direct payments does not aim to provide enough income for its users by such managerial activities, but the fact that this system alone cannot guarantee financial independence is worth noting.

D. 
Discussion regarding Points of Direct Payment System seen as Beneficial (3)

1) Yet another argument is that the system of direct payments reduces the overall cost. How and where is that reduction possible? It would seem that cost reduction can be mainly achieved in the following two casesš05.
2) One is the possibility
to reduce the salary of PAs by using employment based on free contract. It might benefit the bill payers, but it is not good for PAs and, if it leads to deterioration of the quality of PAs, might not be beneficial for users eitherš06.
3) Another is the possibility of reduction of management costs. This does seem plausible, but the actual reduction would surely vary case by case. Compared to organizations with their large personnel working in that department, individual management
in many cases would cost less. However, if we calculate the costs per user, it is highly probable that the costs can be comparatively lower if just one organization manages many users and their PAs. If we try to reduce the costs even further, that would automatically mean a reduction of the fees gained by users in their role of employers, and this shall diminish the advantage of 3-1.

E. Points
of Direct Payment System seen as Drawbacks
1) One point often mentioned as a drawback is that as long as the benefits are paid in cash, it is difficult to ascertain whether they are in fact used for hiring PAs.
2) Another is the question whether users can really properly hire and manage PAs. It is added that this problem can be remedied, if there is support for users to help them hire and manage PAs, which is a point mentioned in the work of Prideaux [2009], and that those users who cannot or do not want to manage PAs even though such system of support exists, can choose not to use the system. Dr. Prideaux also emphasized this point at our seminar.

F. Setting the amount of payment

1) When a certain amount of money is provided to users, and (under condition that the money will in fact be used to pay PAs (E-1)) and if users can decide how to use the money, other conditions being the same, the money can be spent most efficiently.
2) But in this case there is another problem, namely, of how to decide the total amount to be provided. Should it be stipulated on the basis of hourly rate multiplied by assistance hours needed,
as is done for other systems? But in that case can't users set the salary higher for their family members, and lower for others? š07 If so, government might perceive that stronger control on the use of the subsidies is required and feel compelled to enforce such a control. And this might be one of the reasons government entities
responsible for the use of the funds
are not very keen on employing the system of direct payments.

G. Once more regarding the Situation in Japan

1) In Japan, in order
to reduce the costs, the government created and partly established a system, whereby
instead of adding up the costs of individual services
, a fixed amount of monthly payment is paid. However, the system works in a conventional way, in which money is not paid directly to users, but is paid to the agencies, from where it is then paid to the PAs registered there. Concerns stated in  E-1, or F-1 might have influenced this decisionš08.
2) In Japan the system of direct payments has not been promoted so far. One reason is that it is difficult to introduce this system in the general framework of the present policies. Another is that not all users can use this system (C-2). Yet another is that employment of PAs for just one user cannot produce enough income for her to live on (C-3). And, finally, that the government can ensure autonomy of users by paying fees directly to the PAs who are chosen by users (B-4).
3) Instead of promoting the system of direct payments, another system was established whereby Centers for Independent Living (CILs), which are mainly managed by people with disabilities, function as agencies registering both users and PAs and arranging and managing the relationships between them. The government provides sums corresponding to the hours of service provided to CILs, and CILs pay most of the amount received to PAs leaving a part to the center as a salary that is paid to people with disabilities working for it so they can make their living by their work thereš09.
4) However, often people with disabilities establish individual centers used to provide PAs for just one person, and hire and manage PAs for themselves. This is in fact very close to the system of direct payments.
5) There are various requirements to be met by those who want to establish and run a
Center for Independent Living. Managers and PAs are required to have certifications, and this makes the system difficult to use. There are arguments and movements trying to amend the situation, but the requirements are getting stricter and stricter, which is one of the issues being disputed.
6) The disability movement in Japan thus focused on the problems contained in the system of service provision, and people with disabilities also tried and to some extend succeeded in improving the system by working inside it. At the same time, they made (and had to make) the argument that no matter how severe one's disability is, services required to support his or her life have to be provided. Partly this claim was satisfied and some people with disabilities living independently and supported by up to
24-hour assistant service provided by public funding started to appear
starting from the 1990s. And the availability of this option is gradually increasing to encompass even people, whose disabilities are quite severe, who need to use ventilators, require suction or changing of position at nightš10. On the other hand, as the system and the amount of services and funding provided increase, the pressure to reduce them is increasing as well.
7) This is why Japanese people are interested in the systems and mechanisms of providing and using the assistant services in other countries. Even more than that, they are interested in how much assistance is available for disabled people in the UK and other countries, and whether it is sufficient for even those with the most severe disabilities to live independently without depending on their family membersš11.

H. Summary

1) As discussed in C and D, we should be cautious when emphasizing the need for direct payment system in terms of its economical and performative efficiency (although, of course, preventing wastefulness itself is not at all a bad thing).
2) As discussed in B,
direct payment system is beneficial since it respects the right of choice and decision of users themselves, but the same can be ensured by other systems.
3) Of course, these arguments do not deny the effectiveness of
direct payment system. But if it is to be adopted, there is a need to at least to some degree respond to questions and already voiced concerns such as those listed in E-1 and F-2. (And when I say "to some degree" I mean firstly that these questions and concerns cannot be resolved entirely, but then they do not need to be).

Footnotes:

Simon Prideaux et al. š01@This paper was written looking back at the discussion made during the research session entitled Points on Direct Payments: Asking Dr.Simon Prideaux at Ritsumeikan University. I shall work on it further and publish it as a paper in near future.
š02@This point was introduced in Tateiwa [1990=1995]. I also wrote an article (in Japanese) regarding it in Welfare Dictionary.
š03@"As the payment system for social support, the national and municipal governments should mainly provide the financial resources, and individual recipients should arrange and utilize the services according to their own needs. (Human Care Association Local Welfare Plan Planning Committee, 1994)
There are two ways for governments to guarantee income and provide welfare services: one is to
directly
provide money in cash for the users, and another is to directly provide goods or services. The former is surely better in terms of guaranteeing basic income, but how good is it in terms of provision of goods and/or services according to individual necessities? So far, the latter way was adopted as a matter of course in Social Welfare Services. But it also was problematic, since when goods and/or services are provided by the government directly, the government has the ultimate say in the choice of service providers, while the responsibility regarding the quality of the service was left undefined, and users' demands were not attended to. But if this point is amended so that users can choose services, and if the service providers have to either respond to users' demands or go bankrupt, the quality of the services should improve to levels much higher than they are at the time when the government was the sole provider of services. Therefore, the range of services, for which payment in cash is provided, should be expanded. (Human Care Association Local Welfare Plan Planning Committee, 1994)
This issue was also raised in academic writing by Ogawa and Okabe (Ogawa[2006], Okabe[2006]).
š04@Basic points of this argument are shown in Tateiwa [1997].The problems care assistance presents are discussed in Tateiwa [2000]
š05@Another possibility for a cost reduction is by eliminating the office rental costs when users do the work of hiring and managing PAs at home.
š06@Dr. Prideaux pointed out that it is important that the legal minimum wage and various labor laws are followed. He also pointed out that the legal minimum wage in UK is too low, and the same arguments are made in Japan. It is thus necessary to improve working conditions including the salary, though, if they are in fact improved, the argument for direct payment based on the idea that it can reduce costs by hiring PAs cheaply will not stand.
š07@The position of family members remains a problem. I agree with Dr. Prideaux that fundamentally family members should receive proper payment from the society just as anybody else. Those who assist disabled people paid by the society "are people, including family members, who are willing to spend their whole life or part of it engaged in that activity full time or part time, given that
there is an agreement between them and those who receive their assistance
." (Tateiwa [2000])
However, this system may pose some problems. One is that, especially when there are no other PAs available, family members are compelled to provide assistance with no possibility to escape from it. There was a discussion on this point when the Public Long Term Care Insurance* (2000 -) was introduced.
Family members are not paid by the society today, though
not only due to the fact that this discussion took place.
There is another possibility that family members whose livelihood depends on their jobs as PAs may not want to let users go when the latter want to live independently.
Of course, there are ways to solve these problems. And there is a need to solve problems that can and do appear if not completely then at least partially. As long as they are handled properly, we can and should pay for the family members.
* English translation of the 
Long-Term Care Insurance Act http://www.japaneselawtranslation.go.jp/law/detail/?ft=1&re=01&dn=1&co=01&x=75&y=8&ky=%E4%BB%8B%E8%AD%B7%E4%BF%9D%E9%99%BA&page=1
š08@This point was researched into and a report created. It shall be introduced separately.
š09@Refer to
Tateiwa [1995a] for a discussion on justifiability of this system, and to [1995b]
for the actual activities of the organization.
š10@Refer to Tateiwa
[2004]
for a study on life conditions of people with ALS (amyotrophic lateral sclerosis). Refer to
papers of Nishida [2009], Hasegawa [2009], Yamamoto [2009], and Hotta[2009] published in our center's journal
"Ars Vivendi" for a narrative of how people with ALS left hospitals and began living independently. Most of people with ALS eventually need ventilatory assistance, but in Japan only 30 to 40% of people with ALS decide to live on using it. I t seems that the percentage is even lower in Western countries. In other words, after that "choice" is made, many people die. Refer to Tateiwa
[2008] and [2009] for a discussion on euthanasia and death with dignity 
š11@During the session with Dr. Prideaux, KAWAGUCHI, Yumiko and ITO, Kayoko were most interested in this point. Both are graduate students and members of our COE program, and at the same time Kawaguchi is providing support for people with ALS, while Ito is doing the same for people with muscular dystrophy. They are very much interested in the amount of social service provided and the amount of budget allocated to those with such disabilities in other countries. Dr. Prideaux answered that the state of services greatly varies within the UK depending on the locality.

References:

*ASAKA Junko, OKAHARA Masayuki, ONAKA Fumiya & TATEIWA Shin'ya October 25, 1990 Ars Vivendi: Sociology of Disabled People Living outside Families and Institutions, Fujiwara Shoten, 320p.=May 15, 1995 Ars Vivendi: Sociology of Disabled People Living outside the Families and the Institutions, Enlarged and Revised Edition, Fujiwara Shoten, 366p. 3045 [amazon]/[kinokuniya]
*HASEGAWA, Yui February 25, 2009 "Supporting a Single ALS Patient to Start Living Independently (2): June 2008", Ars Vivendi 1:184-200
*HOTTA, Yoshitaro February 25, 2009 "Supporting a Single ALS Patient to Start Living Independently (4): Problems, Causes and Solutions, Ars Vivendi 1:218-235
*Human Care Association Local Welfare Plan Planning Committee March 31, 1994 Social Policies based on Needs: Structural Reform of Welfare proposed by Center for Independent Living, Human Care Association, 88p., 1000
*NISHIDA, Miki February 25, 2009 "Supporting a Single ALS Patient to Start Living Independently (1): March to June 2998, Ars Vivendi 1:165-183
*OKABE Kosuke June 5, 2006 Services and Supports for Persons with Disabilities Act and the Autonomy of Care: Personal Assistants and Direct Payment, Akashi Shoten, 161p. ASIN: 4750323551 2100 [amazon]/[kinokuniya]
*OGAWA Yohsimichi 2005 Support for Independence of Disabled People, Personal Assistance & Direct Payment, Akashi Shoten
*PRIDEAUX, Simon July 2009 "Disabled People and Self Directed Support Schemes: Re-Conceptualising Work and Welfare in the 21st Century"iMS Word)
*TATEIWA Shin'ya October 25, 1990 "Quickly and Slowly: Foundation and Development of Independent Living Movement", with Asaka, Okahara and Onaka, Ars Vivendi : 
Sociology of Disabled People Living outside the Families and the Institutions
(Sei no Giho), Chapter 7, pp.165-226
*TATEIWA Shin'ya May 15, 1995a "Challenge of Centers for Independent Living", Asaka et. al., [1995:267-321]
*TATEIWA Shin'ya May 15, 1995b "A Theory of Assistance: a 
System supported by those concerned, where I Decide, and the Society Supports", Asaka et. al., [1995:227-265]
*TATEIWA Shin'ya September 5, 1997 On Private Property (Shiteki-Shoyu Ron), Keiso-Shobo, 465+66p., 6300 [amazon]/[kinokuniya]
*TATEIWA Shin'ya October 23, 2000 Freedom to be Weak (Yowaku aru Jiyu e), Seidosha, 357+25p. 2940 [amazon]/[kinokuniya]
*TATEIWA Shin'ya November 15, 2004 ALS: Immovable Body and Breathing Machine (ALS Fudo no Karada to Ikisuru Kikai), Igak-Shoin, 449p. ISBNF4260333771 2940 [amazon]/[kinokuniya]
*TATEIWA Shin'ya September 5, 2008 Good Death (?) (Yoi Shi), Chikuma-Shobo, 374p. ISBN-10: 4480867198 ISBN-13: 978-4480867193 2940 [amazon]/[kinokuniya]
*TATEIWA Shin'ya March 25, 2009 Sole Life (Tada no Sei), Chikuma-Shobo, 424p. ISBN-10: 4480867201 ISBN-13: 978-4480867209 [amazon]/[kinokuniya]
*YAMAMOTO, Shinsuke February 25, 2009 "Supporting a Single ALS Patient to Start Living Independently (3): July 2008", Ars Vivendi 1:201-217


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