Material 3: “Disabled Persons' Needs are the Power for Social Resources Development,” included in the June 2002 issue of “Gekkan Fukushi (Monthly Magazine Welfare)”
Koji Onoue, representative of Center for Independent Living - Navi
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Establishment of CIL Navi based on the movement by persons with disabilities

We, Center for Independent Living - Navi (hereinafter referred to as CIL Navi, Osaka city), “conduct various activities for persons with disabilities to realize independent living in the community based on their own will. We aim to promote implementation of independence support activities, development of social resources, and rights advocacy activities, from the standpoint of persons with disabilities themselves” (cited from the Center's regulations.)

We promote building self-confidence and establishing a specific image of independence through peer counseling, independent living programs, etc., and also provide information and develop social resources. Four out of five staff members are peer counselors with severe disabilities.

CIL Navi was established in 1998, but the history of the disabled persons' organization that was the parent body of CIL Navi dates back to events 30 years ago, such as the “Go-out-to-town movement.” Also, we have been involved with the enrichment of care service and barrier-free transportation in Osaka city.

Partly due to our background, we are often asked for advice from severely disabled persons with systemic disabilities, such as cerebral paralysis and muscular dystrophy, which is one of our specialties. Furthermore, we began to be entrusted by Osaka city with municipality living support services in fiscal 1999, and the content of counseling has become more diversified due to referrals, etc., from ward offices and other agencies. Centered on peer counselors, we handle 40 to 50 cases of counseling a month.

Both the representative and director of secretariat have disabilities, and more than half of the working committee members also have disabilities.

Peer counseling is the core of an independent living center

As is already known, an independent living center has two major characteristics: operation through initiative by persons with disabilities and supply of service toward independent living. An independent living center's basic services include peer counseling, independent living programs, information supply, and advocacy of rights.

Peer counseling helps persons with disabilities be freed from self-abnegation - ideas such as “I cannot do anything” and “I am no good because I was born with a disability, ” which have been developed through past suppression - and it helps them regain self-confidence and establish assertiveness. Regarding independent living programs, there are programs for groups consisting of four to eight people each, as well as individual programs specifically implemented toward independent living according to each individual's situation. In addition, we conduct field trips for actual experience in going out and role play to perform an assumed role. Also, we implement an independence program in which an actually independent life is simulated by using an independence experience room, etc., and a schedule and attendant care system are arranged, to be checked through actual experiences. Of course, the person with a disability himself becomes a leader in implementing such a program.

Peer counseling and an independence living program are the major pillars of support, and through the process, we provide information as needed. On such occasions, we not only provide administrative information but also introduce various social resources necessary for daily living (for example, introduction of a beauty salon where a disabled person can receive service in a wheel chair).

In the above-mentioned counseling process, we go to related agencies with the persons concerned for coordination, according to needs, and also work to establish a new system and service as advocacy of rights. Furthermore, we introduce disabled persons' activity groups, as needed.

In this way, independent living centers' services are conducted based on equality from the perspective of a peer (another person with a disability), aiming to realize disabled persons' independent living based on their self-confidence, by empowering them through various experiences and information supply.

Peer counseling, which plays a core role with these series of processes, is a service that symbolizes the uniqueness of an independent living center.

From Osaka city's disabled persons care management model project

In training conducted by the government, the following factors have been presented as characteristics of care management of persons with disabilities: (1) priority on a disabled person's needs; (2) development of social resources; (3) care management of Long-term Care Insurance is based on “care service at home,” but for persons with disabilities, a guide helper, communication support, securing of housing, and employment support are also included from the viewpoints of independence and social participation; (4) the final goal of care management of persons with disabilities is in self-management; and (5) emphasis on empowerment of persons with disabilities through all the processes.

In order to spread disabled persons' care management based on such ideas, Osaka city has been implementing system establishment promotion projects for two years. As part of the projects, CIL Navi was also entrusted with a model project.

We studied cases of requests for cooperation in a model project from the viewpoints of “having (not singular but) complex needs,” “having severe / multiple disabilities,” “requiring development of social resources, as existing services cannot meet needs,” and “request for shift to / continuation of community life. ” The reason is that we believed that the method of care management of persons with disabilities should be used especially for such cases.

This model project has clarified the importance of the following: living based on disabled persons' needs, and development of services and social resources to realize such living, as well as the realization of their empowerment in the process. From the model project, we would like to introduce several cases here.

Mr. A, who has ALS and uses an artificial respirator, initially complained of anxiety and frustration as his disability progressed, and a peer counselor repeatedly visited him and listened to him. At one point, (because his family member who mainly took care of him became sick), he was about to be socially hospitalized for a long time, but nursing service could be enriched based on the report through care management, which enabled him to continue community life.

In addition, a routine nursing system was secured, which led to development and clarification of his needs. In order to realize his desire to see the professional baseball manager who he had known since his school days, his needs gradually expanded to include securing a system to help him go out, related practice, and adjustment of transportation service. This indicates that solution of immediate needs does not mean completion, but it develops into following needs.

We prepared a report on the situation that became clear through care management of persons with disabilities and on enrichment of nursing services based on needs. This has realized a certain level of enrichment of the care system, dispatch of a helper for longer hours of care than certified through cooperation of a help center concerned, and practically 24-hour care. In addition, we worked to realize similar services also for Mr. B, who has multiple disabilities of hearing disorder and cerebral paralysis. These two cases required not only full nursing care but also communication support (sign language, expression of intention by blinking, reading / hearing of speech with severe difficulty) and irregular-hour nursing care that requires experience.

Also, Mr. C, who has cerebral paralysis, wants to end an institutional life that lasted over 15 years since school and start community life. Towards this end, he participated in an independent living program and visited a person with a disability who is already living independently. He has also begun to regularly go to a local workshop for persons with disabilities to enrich daytime activities. Furthermore, he experienced a trial move-in, working toward independence. Because of the bureaucratic vertical structure of institutional and home services, the care costs, etc., for going to the workshop or moving in for experience cannot be covered by the existing system. These programs could be implemented by participating in a model project for shifting from institutional life to community life, that Osaka city started as its original project.

Can the ideas of care management of persons with disabilities be used in the Assistance Benefit Supply System?

Starting in 2003, many welfare services for persons with disabilities shifted to the Assistance Benefit Supply System. Related to the shift, I would like to discuss the issues I have noticed through implementation of the model project, as the closing words of this report.

Firstly, it is important to grasp disabled persons' needs with focus on social participation and communication support, instead of limiting to service in a living room.

The second point is to work to switch from the conventional idea of “independence in activities of daily living.” An idea of the independent living movement is that “it is more independent as a way of living for a person with a disability to do daily necessary procedures in 15 minutes with the help of a care giver and spend the remaining 45 minutes for the activity he likes and for social participation, rather than taking one hour to do the procedures on his own.” It is important to search how the life a person with a disability desires can be realized, instead of considering if it is possible or not.

The third point is the relationship between care management of persons with disabilities and development of social resources. In this recent model project, we could realize 24-hour nursing care service through understanding and cooperation by the local government concerned and the help center. We need a system to expand services based on disabled persons' needs.

The fourth point is related to the third - we need a system for care management (including self-management) of persons with disabilities to positively affect decision-making on assistance benefits and budget (in the next fiscal year and thereafter if budget is short in the fiscal year concerned) and enrichment of services.

The fifth point is the importance of support for the shift in promoting “leaving an institution and living in the community.” For a person who has stayed in an institution for a long period to shift to a community life, programs and services focused on preparations, such as daytime activities, and life experiences including going out and independence experience, are essential. It is necessary to establish systems / services that can be used during such transition phases.

We hope that principles on care management of persons with disabilities such as “priority on a disabled person's needs,” “development of social resources,” “self-management,” and “empowerment” will be used in operation of the Assistance Benefit Supply System.

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