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Notes on Direct Payments

Japanese Version

Tateiwa, Shinya July 24, 2009 *01
Points on Direct Payments: Asking Dr.Simon Prideaux, Ritsumeikan University

A. Situation in Japan
1) There is a limited kind of Direct Payments system in Japan, too. The payment of Care-Additions for Supplemental Security Income, which was achieved as the result of Japanese Disabled People's Movement since 1970s, has a form of Direct Payment. However, this system is only for low income people. *02

2) There has been discussion on Direct Payments in Japan mainly after 1990s, and some people in Disabled People's Movement are positive for it. For Example, the Plan made by Human Care Association in 1994 (Tateiwa was a member of it) also appealed for Direct Payments. *03

B. Discussions on Benefits of Direct Payments 1
1) Some point out that each user become an employer in the system of Direct Payments, thus can use PAs (personal assistants) most efficiently. It's agreeable that users can control more by becoming the employer, and also such position give the positive effect on users, too.

2) However, problems remain that the holder of the financial resource still holds the control. The government holds the resource, which was originally came from tax payers. Therefore, it is possible to claim that the authority on money belong to governments, tax payers, or the holders of resources. This can leads to less respect on users' decisions. It is better not to claim that the users can control PA BECAUSE they have the resource to pay to PA. It is better to claim that the users have the authority no matter where their resource (money provided in the market) belongs to or who owns that resource. *04

3) As long as the point 2) is understood, the users can have benefit in the system that users can choose PAs and services by themselves.

4) However, the system of Direct Payments is not the only method to realize the point 3). It is also possible if the government pay to the PAs and services that users chose.

C. Discussions on Benefits of Direct Payments 2
1) Some say that the benefit of Direct Payments is that users hire PAs and manage them, so the users can achieve income. Prideaux [2009] also pointed out this. I agree that it is possible to do so.

2) However, how many disabled people can manage such a role as an employer? The answer provided on this point is that only those who prefer this system should use this system. OK, I accept that. Still, we should remember that not all disabled people can take the advantage of Direct Payments.

3) Even if a user can hire and manage enough PAs for him/herself, instead of working to manage group of users and PAs, can the user make enough income to live independently? I suppose not. Maybe the system of Direct Payments does not aim to provide enough income for the users only by hiring and managing PAs. Still, we should remember clearly that this system cannot guarantee the financial independence only by itself.

D. Discussions on Benefits of Direct Payments 3
1) Some say that the system of Direct Payments will reduce the overall cost. How and in what situation it can reduce the cost? I suppose it is possible in mainly two cases. *05

2) One possibility of reducing its cost is by reducing salary of PAs in freelance bases. It might benefit the bill payers, but it is not good for PAs. And if the quality of PAs becomes lower because of low salary, then users also suffer as the result. *06

3) The other possibility is that they can reduce its cost on management. There might be, but it is case by case. Self management can cost less compared to management organizations with many officers. However, if we calculate the cost per user, it is possible that the cost can be lower compared with one organization with many users and PAs. If we try to reduce the cost of self-management by a user, the user (employer)'s share will be reduced. This contradicts with the benefit of Direct Payments discussed at 3-1.

E. Difficulties
1) Some say that paid cash may not be used for hiring PAs, and it would be difficult to audit it.

2) Some worry if users can really hire and manage PAs properly. I suppose if users are supported to become able to hire and manage PAs, then it should be OK. Prideaux [2009] also said so. Those users who cannot or do not want to manage PAs can choose not to use the system of Direct Payments. Dr. Prideaux also emphasized this point.

F. Setting the amount of payment
1) When certain amount of money is provided to users, and (following the conditions that the money should be used to pay for PAs: E-1) users can decide how to use the money. Then the money can be spent most efficiently.

2) Then, the problem of how to decide the amount of payment occurs. Shall we decide according to the hourly rate versus necessary hours in other systems? Isn't it possible that users set the salary higer for their family members higher, and lower for other people? *07. The governments might require stronger audit on the use of payment, and this might discourage the government that is responsible for the budget if the system of Direct Payments is introduced.

G. Situations in Japan again
1) In Japan, the government once established a system to pay the fixed amount of monthly payment instead of adding up the cost of individual services. This system was introduced to reduce the cost, and actually realized partly. However, the money was not paid directly to users, but paid to the agencies, and then paid to PAs who registered there. There might be some worries like E-1, or F-1. *08

2) In Japanese the system of Direct Payments has not been promoted so far. One reason is that it is difficult to introduce the system in present policies. Another reason is that not all users can use this system (C-2). Another reason is that since managing PAs for one user cannot make enough income, it is necessary to handle groups of users and PAs to earn enough income to live with it (C-3). The government can guarantee the autonomy of users by paying directly to those PAs who are chosen by users (B-4).

3) Instead of Direct Payments, Center for Independent Living (CIL), which is mainly managed by disabled people, functions as an agency; both users and PAs who resister at CIL and CIL arrange and manage the relationship between users and PAs. The government fund is paid to CIL, and CIL pays most of the fund to PAs according to their work hours. Part of the fund is used by CIL, and disabled people who work for CIL earn salary from it and make their living. *09

4) In this system, some disabled people set up one-person CIL for themselves, and hire and manage PAs to assist themselves. This is close to the system of Direct Payments.

5) There are various limitations on organizing and running the CILs. Managers and PAs are required to have certifications, and this makes the system worthless. Therefore, some people raise their voices to oppose this CIL system, and that can lead to the issue of Direct Payments.

6) Japanese Movements focused on the system of providing services, and tried to improve the system by disabled people working inside the system. What they have appealed strongly, and what they had to appeal, were that no matter how severe the disability was, enough services to make their living had to be achieved. It is partly realized; some disabled people began to live independently from 1990s by affording the 24-hour assistant service with public funding. Such a case has been increasing among severely disabled people who use ventilators, and they require sunction or changing of position at night, too. *10. On the other hand, as the system and funding expand, the pressure to reduce the amount has been increasing as well.

7) This is why Japanese people are interested in the system and mechanism of providing and using the care assistant services in other countries. More than that, they are interested in how many assistants are available for disabled people in UK and other countries to confirm if enough service is available for most severely disabled people so that they can live independently without depending on their family members. *11

H. Summary
1) As discussed in C and D, we should be cautious to emphasize the benefit of Direct Payment in economical and efficient reasons (of course, it is better to prevent waste).

2) As discussed in B, Direct Payment has the benefit on respecting the choice and decision of users themselves, but other system can realize it as well.

3) Of course, these discussions are not to deny the effectiveness of Direct Payment. I raise these points to be ready to respond to the questions and concerns like E-1 and F-2 for some degree. (I say "some degree" because these questions and concerns cannot be, and not need to be, cleared completely.


*01 I wrote these notes based on the discussion at the Points on Direct Payments: Asking Dr.Simon Prideaux session at Ritsumeikan University. I plan to brush up these notes into more completed article in near future.

*02 We introduce about it at Tateiwa [1990=1995]. I also wrote the article (in Japanese) in a Welfare Dictionary.

*03 As the payment system for social support, the national and municipal governments should mainly provide the financial resource, 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 systems that governments guarantee the income and provide welfare services: one is to provide cash for the users directly, and the other is to provide goods or services for the users directly. The former is better for guaranteeing the basic income. But how about providing goods and/or services according to individual's necessities? So far, Social Welfare Services means the latter as the matter of fact. The problem in providing good and/or services direct was that government decide the agencies on their own, the responsibility on quality of service was left unclear, and the demand of users were not answered. If this point is reformed so that users can choose services, and the service agencies have to respond to their demand to continue, then, the quality of service should improve than the government was the sole provider of services. Therefore, the range of payment by cash should be expanded than present situation. (Human Care Association Local Welfare Plan Planning Committee, 1994)
Ogawa and Okabe wrote academic books on this topic (Ogawa[2006], Okabe[2006]).
*04 I wrote the basic of this topic in Tateiwa [1997]. I also wrote on Care Assistance in an article of Tateiwa [2000]

*05 It is also possible that the cost will be reduced because users can do the work of hiring and managing PAs at home instead of renting an office.

*06 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 to live on. The same is said in Japan. It is necessary to improve the working conditions including the salary. However, if the salary is raised, then the argument of Direct Payment that it can reduce the cost because of freelance PAs does not stand anymore.

*07 The position of family members remains as a problem. I agree with Dr. Prideaux that, basically, the family members should receive proper payment same as other hired staffer. Those who assist disabled people with proper payment "basically, if those who provide assistance and those who receive assistant agree, are people, including the family members, that are willing to spend their whole life or part of their life to that activity full time or part time." (Tateiwa [2000])
However, some problems can occur when hiring family members. One is that, especially when there is no other PAs available, family members cannot escape from the assistant work. There was discussion on this point when the Public Long Term Care Insurance* (2000 -) was introduced. Not only because of that controversy, family members are not paid publicly for their care services today.
There is another possibility that family members depend on this job for their living, and when the users wanted to live independently, they cannot leave the family.
Of course, there are ideas to solve these problems. It may not solve the problem fundamentally, but it can lighten the problems which might and is actually occur. As long as we handle it properly, we can, and should, pay for the family members. *Long-Term Care Insurance Act in English 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

*08 We have investigated on this point. I'd like to refer to it separately.

*09 The justification of this system is written at Tateiwa [1995a], and its actual activities are introduced at [1995b]

*10 Tateiwa's study on independent living of patients with ALS (Amyotrophic Lateral Sclerosis) [2004]. How the ALS patient left hospital and began living independently was written in articles, which are published in "Ars Vivendi"; Nishida [2009], Hasegawa [2009], Yamamoto [2009], Hotta[2009]. Most of ALS patients eventually need the help of ventilator, but only 30 to 40% of ALS patients decide to live on with ventilator's help in Japan. I heard that percentage is even smaller in western countries. That means, many people die after deciding not to put on a ventilator. Tateiwa's writings on Euthanasia/Death with Dignity [2008] & [2009]

*11 In this session with Dr. Prideaux, KAWAGUCHI, Yumiko and ITO, Kayoko were most interested in this point. They are graduate students and members of COE projects, but at the same time, Kawaguchi works for supporting ALS patients, and Ito works for people with Muscular Dystrophy. They are interested to know how much social service is available and how much budget is shared for it. To their questions, Dr. Prideaux answered that situation of services vary depending on locality.


*ASAKA Junko, OKAHARA Masayuki, ONAKA Fumiya & TATEIWA Shin'ya October 25, 1990 Ars Vivendi: Sociology of Diabled People Who Left Home and Institution, Fujiwara Shoten, 320p.=May 15, 1995 Ars Vivendi: Sociology of Diabled People Who Left Home and Institution, 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, Cause and Solutions, Ars Vivendi 1:218-235

*Human Care Association Local Welfare Plan Planning Committee March 31, 1994 "Social Policy as if Needs Mattered: 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 Sopport 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 CenturyiMS 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 Diabled People Who Left Home and Institution (Sei no Giho)", Chapter 7, pp.165-226

*TATEIWA Shin'ya May 15, 1995a "Challenge of Center for Independent Living", with Asaka et. al., [1995:267-321]

*TATEIWA Shin'ya May 15, 1995b "The Theory of Assistance: We Support the System that I Decide and the Society Supports", with 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. ISBNF4260333771 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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Preparer & Translation: Midori Hiraga
Shin'ya Tateiwa (Japanese) Shin'ya Tateiwa (English)
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