Consumer-oriented Community Care

Shoji Nakanishi
Chairperson, Human Care Association
Member of the Board, DPI-Japan

1. Trend of the world
　The world is now facing an aged society. The Community Care (Direct Payments) Act 1996 In England and the Long Term Care Insurance in Germany are examples of counter policies in other countries.　For many years, welfare measures for persons with disabilities (PWD) have been formulated in ways different from those of elders. But recently the situation has changed. Governments want to cover PWD's with systems made for elderly persons because of decreased budgets for social services.

2. Nursing Care Insurance Law in Japan
　In Japan, the Nursing Care Insurance Law will be effective in 2000. The system is totally oriented in a medical model. PWDs in Japan are against the plan to integrate them in the system. Last year, the national government established a committee on the care management system. Two members representing the Japan Council on Independent Living Center were appointed by the Ministry of Health and Welfare as committee members. As a result of our powerful influence, a self-managed care scheme was accepted by the committee.
　However, the care management system is still alive. The government still intends to include PWDs in the nursing care insurance in spite of our campaign. The Ministry organized a training seminar for the leaders of care managers for the disabled in each prefecture in August this year. I was invited to take part as one of the resource persons. A logistic support was provided by the Nagoya Municipal Comprehensive Rehabilitation Center. Two participants represented each prefecture. One of them was from the Prefectural Counseling Office that makes assessments of disability through its attached rehabilitation center, and the other from community workers dealing with disability issues. Both were nominated by the prefectural government. Among them there were only four participants with disabilities.

3. Independent living model versus rehabilitation model
　The seminar lasted for a week. On the first two days, lectures were given on the principles of care management. References were made to self-choice, self-determination, independence, empowerment, and the transition from the medical model to the living model. I was given an opportunity to discuss the activities and philosophy of IL centers.
　The goal of the seminar was to let the participants understand the philosophy, which should be followed in the real exercise of making care plans. When it came to the stage to formulate plans, however, most workers ignored views expressed by quiet disabled persons. They just listened to their vocal family members and spouses of the disabled persons. It seems difficult for them as municipal case workers and staff members of rehabilitation centers to learn to respect and honour the wishes of disabled persons. Rehabilitation professionals think they have understood the philosophy of independent living but cannot yet put it into practice.
　For instance, the professionals visited the house of a disabled person who did not read newspapers and could not write. He was considered to be passive, because they only focused on his physical function. The peer counselor who trusted in him considered that he might need better eyeglasses or that his hands might be too weak to hold a pen. In the context of independent living, disabled persons are accepted as whole beings with not only medical needs but also social and emotional needs. The difference between these two cases is huge.

4. Personal assistance services of IL centers
　The danger of continued control over disabled persons was pointed out by Mr. Vic Finkelstein, a scholar and a disabled activist in the UK, when the professional workers in institutions got involved in community care. Before institutions were established by professional people, disabled persons had been in the community taken care by community people. In the present days, the community has collapsed. Disabled persons have no option but going to an institution due to the lack of a community support system. Therefore, independent living centers emerge as an alternative support system.
　In the history of rehabilitation in Japan, care management has been conducted by professionals using a team approach. Care plans were made,however, without the full participation of persons with disabilities themselves. Sometimes the considerations and feelings of the PWDs were not taken into account or were even ignored.
　Disabled persons involved in the independent living movement have succeeded to get subsidies from some local governments to hire personal assistants. It helps ILCs provide services by dispatching personal assistants to homes of persons with disabilities. Some big ILCs in Japan have been contracting with local governments to conduct personal care assessment. A majority of PWDs need and employ more than one personal assistant. For personal assistant services to a PWD, a fee is paid directly to his/her particular assistant by the local government in order to avoid complicated paper work. Thus, disabled persons themselves actually manage the payments of services rendered by the assistants. These payments do not include social security assessments or income taxes that must be paid by the assistants themselves.

5 Consumer-centered care management
　Care plans should be made by PWDs themselves. A care consultant is expected to be their assistant in making plans. PWDs' initiatives to make their own care plans should be assisted by consultants by providing necessary information. These consultants are to access professional resources as an information bridge between PWDs and professionals.
　Three Structures of Self-Managed Care can be considered.
(1). Care consultant agency -- A peer counselor who is mainly in an ILC plays the role of the care consultant. A care consultant must have long experience in independent living and wide knowledge about resources and resource people. They help PWDs by giving information about good selection of personal assistants from the consumer's point of view, good examples of home remodeling or adjustments, advice about transportation services, relationships within the neighborhood and advocacy of human rights. The PWD can select a care consultant. An occupational therapist (OT) who has received community care training can serve as a part-time assistant to the care consultant.
(2). Care service committee -- The head of a care consultant agency, which is established under the control of ILC, has the privilege of forming a care service committee in consultation with local governments in order to solve problems when there are shortages of care services in the area or city. The committee should consist of the city mayor, a related city officer, a PWD, a personal assistant and a care consultant. The committee should effectively support the needs and welfare of PWDs in the area or city.
(3). Ombudsperson or group of ombudspersons -- Each prefecture in Japan must have one independent ombudsperson or group of ombudspersons, who should be consumers, but who are not members of any government agency or service-provider organization. The functions of independent ombudspersons include checking on institutions, work places, educational facilities and PWDs in terms of care related matters.
　Persons with disabilities who can make their own care plans by themselves already know where they can find information and resources they need. They have long experience in independent living in communities. Their daily lives are stable and organized. For them, a care manager is useless and sometimes even harmful.
　Those who are in a transitional stage of self-managed care believe that they can make their own care plan, although some persons around them doubt their abilities. In these cases, it is very important for the PWD to have the opportunity to make his or her own care plan as experiments, even taking some risks. This leads to self-confidence, self-respect, self-esteem and self-empowerment. Through this system, PWDs can get out from under the protection and control of others.
　Those who ask assistance in making their own care plans can select their own plan from two or three options provided by care consultants. In some cases, PWDs may have difficulties in communicating. Thus, the PWD can bring a personally selected friend or family member to help the planning process with the care consultant. For those who have difficulties making decisions, the consultant must first study their life history, their favorite ideas, selections, references and then propose various care plan options from the viewpoint of the PWD. The PWD should discuss care plans with the consultant with the aid of friends and/or family members.
　Care assessment usually takes place before care services are provided. PWDs must realize their real needs by taking initiatives in making assessments of their needs. They may fail to make proper assessments initially. Through experience they will be empowered and finally succeed in making their own need-based care plan. The PWD can identify his or her own needs based on self-assessment and if necessary, get advice and information from a care consultant or other professionals.
　Care and support is needed in the following five fields. Categorization has two advantages on the PWDs side; to limit intervention by professionals and to simplify identification of resources.
(1) Activities of daily living (ADL), toilet needs, transfers, sanitary aspects, etc.
(2) Medical treatment and rehabilitation (referral to a hospital, maintaining health conditions).
(3) Housing, adapting, provision of self-help equipment and devices.
(4) Enhancement of independent living (communication, health care, household activities, money management).
(5) Productive and creative life (education, sports, volunteer activities,religious and social activities, employment and travel).

6 Proposal of self-managed care
　There is a personal assistant nomination system in the cities where strong independent living centers exist. The system is similar to the self-managed care in Toronto, Canada, because an IL center can make needs assessments or be influential in the assessment.
　In this regard, the personal assistance nomination system should be developed as national policy, since PWDs in Japan must be given an opportunity to show that they can be self-managers, having a free hand and advocating their principles of self-control and self-management.

(paper presented at the 5th DPI World Conference in Mexico City in Dec. 1999)