SPEAKER:            Yumiko KAWAGUCHI

BIOGRAPHY:

Yumiko Kawaguchi is the president of the company Care Support MOMO and is also the director of Japan ALS Association and Non-Profitable Organization SAKURA.  The Care Support MOMO currently employs 43 care givers and provides 24 hour personal assistant service for 10 ALS patients in Tokyo.  Every month NPO SAKURA provides training courses for over 20 new caregivers each from different organizations.

In October, 1995, Yumiko and her family lived in England when she was first informed that her mother in Japan was diagnosed with ALS.  In the following year, 1996, she came back to Japan with her children to take care of her mother at home.  Yumiko and her sister devoted their time taking care of their mother for 2 years.  However, providing 24-hour care was very difficult as there were no prior study and not enough support.  Therefore, Yumiko decided to establish her company MOMO providing caregivers for ALS families.  Since then, she has been involved with promoting sanctioning for ALS patients and developing standard care of ALS and has been providing caregivers to other ALS families in Tokyo.

In 2004, she started her study at Graduate School of Ritsumeikan University for further study of the social system of welfare.  Currently she works with policy-makers of Ministry of Health, Labour and Welfare to improve the social system of welfare. 

AUTHOR:
YUMIKO KAWAGUCHI, MOMOE KONAGAYA, MISAO HASHIMOTO, KIKUKO NAKAMURA, SACHIKO SHIOTA,

e-mail:aji-sun@nifty.com   Tel&Fax: +81-3-3380-2310

TITLE OF PRESENTATION:       

�gSAKURA MODEL�g, a project of advancing the personal assistant system for PALS in TOKYO

ABSTRACT:

BACKGROUND

Patients with ALS (PALS) in JAPAN are provided with caregivers from 3 public home care systems: Administrative Program for Improvement of 'Nanbyo' Care, Elderly Care Insurance System, and Assistant Benefit Supply System. However, elements of care, caregivers�f skill, and the number of caregivers available differ significantly among regional levels. With that, there is not a standard PALS care in Japan. In Tokyo, a small number of PALS and their families learned their rights from the Independent Living Movement carried out by the disabled people and developed a care system for PALS known as the SAKURA MODEL.

OBJECTIVES

We report how the PALS and their families in Tokyo developed the SUKARA MODEL by utilizing a public finding and by training personal assistants.

Program Descriptions:

In the late 1990s, PALS and their families in Tokyo began to train personal assistants. In June 2003, a non-profit organization (NPO), named NPO SAKURA was established. It was renamed SAKURA MODEL later. In September, a monthly course that consists of a 20-hour lesson was created to train 10 to 40 personal assistants. Within the course, we delivered a 9-hour lecture on diet, communication, respiratory management, respirator mechanism, sanitary control, suction technique, legal system, professional ethics, empowerment, and methods of transfer. The program successfully taught tracheotomy suctioning skill during an 11-hour practical training. As of September 2006, 422 members have completed the course and many of them are personal assistants to PALS in the Tokyo Metropolitan Area.

Clinical Outcomes:

The program has solved many problems such as a lack of care givers, high cost of care, and unskilled care. SAKURA MODEL has evolved with private sectors which serve as a network for personal assistants. Now, a network of over 20 service providers has been established in Tokyo.

Recommendations to the Field:

SAKURA MODEL can grow beyond government policies and expand to other regions and countries. By educating personal assistants, PALS are able to enjoy the benefit of proper and efficient care. A study on the cost-benefit of the SAKURA MODEL would be warranted.