International Forum on Independent Living
Keynote Speech：Proposal on Self-Managed Care in Japan:
Personal Assistant System Managed by Persons With Disabilities
Mr. Shoji Nakanishi, Human Care Association
Introduction
Independent living centers (ILCs) in Japan provide services to dispatch personal assistants to homes of persons with disabilities (PWDs). Some big ILCs in Japan have been contracting with local governments to conduct personal care assessment. Although 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 works. Thus, the PWDs themselves actually manage the payments of services rendered by the assistants. These payments do not include social security assessments or income taxes which must be paid by the assistants themselves.
From Care Management to Care Consultant Services
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 the PWDs themselves. Sometimes the considerations and feelings of the PWDs were not taken into account or were even ignored.
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
1. Care consultant agency
A peer counselor who is mainly in an ILC plays the roll 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 government 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 omudspersons, who should be consumers, but who are not members of any government agency or service-provider organization. The independent ombudsman functions include checking on institutions, work places, educational facilities and PWDs in terms of care related matters.
PWDs as Care Planners Can Be in Different Categories
1. PWDs who can make their own care plans by themselves.
These PWDs 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 consultant is useless and sometimes even harmful.
2. Those who are in a transitional stage of self-managed care.
This type of person believes that he or she can make his or her 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.
3. PWDs who ask assistance in making their own care plans.
There are three types of these persons.
A.People who lack information.
They can progress to categories 1 and 2 in due course if provided the right information at the appropriate time.
B. Those who 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.
C. PWDs who have difficulties making decisions due to intellectual disabilities. The consultant must first study the life history of the PWD, his or her 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.
Five Fields of Care Planning
Care assessment usually take 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 in the beginning. 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 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.
- Activities of daily living (ADL), toilet needs, transfers, sanitary aspects, etc.
- Medical treatment and rehabilitation (referral to a hospital, maintaining health conditions).
- Housing, adapting, provision of self-help equipment and devices.
- Enhancement of independent living (communication, health care, household activities, money management).
- Productive and creative life (education, sports, volunteer activities,religious and social activities, employment and travel).
Title : International Forum on Independent Living
Publisher : Japan Council on Independent Living Centers
Date : 1998/10/20
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International Forum on Independent Living
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