TITLE OF PRESENTATION:                

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

Yumiko kawaguchi

1.        Good afternoon, everyone. I am Yumiko Kawaguchi and I serve as the director of JALSAƒthe Japan ALS Association, or JALSA for short,„ and the non-profit organization ALS/MND Support Center Sakura. I am greatly honored to be here, and I warmly thank the program committee for providing me with this opportunity to speak to you.

2.        I will talk about how PALS and their families in Tokyo used existing social welfare programs to develop a user-friendly system named the gSakura Model.h The two women shown in this slide have ALS and have lived at home for many years with the aid of ventilators. They each established a care-providing company for their own care, and used their businesses to train personal assistants and dispatch them to other PALS. This approach to care-giving quickly spread among other PALS and their families, and it has been formalized into the system that we call the Sakura Model. gSakurah comes from the name of our organization and means gcherry blossom,h which, as you may know, is the national flower of Japan. It is our desire to share this model with people in other countries.

3.        First, allow me to explain a few terms used in my presentation. gPALSh means gperson with ALS,h and is a name that members of our organization like to use. A gPersonal Assistant,h or PA, is an attendant who provides one-on-one home care and assistance to PALS. Although PAs start out as non-professionals, their training under PALS and their families allows them to develop into excellent carers. The Sakura Model is a patient-centered care-giving system in which patients actively participate in their own care. It provides PALS with services tailored to their individual needs and preferences, as well as advice and counseling from health professionals. At the same time, the Sakura Model is a business model for PALS to operate their own business of employing and training PAs, who are sent to serve other PALS after acquiring the necessary skills.

4.        @This diagram gives an overview of the Sakura Model. Basically, there are two types of public care services available to PALS living at home. One is called gcommunity care,h which is provided by helpers who are certified by the national government and work through service operators. Unfortunately, this system places greater emphasis on the operatorsf convenience then that of the patients, and very few of the operators do suctioning or provide nighttime and holiday service, which are the most pressing needs of PALS and their families.
@The other type of service is care provided through home visits by health professionals. This service is fully covered by health insurance, but it suffers from a shortage of nurses and does not offer extended stays due to financial restrictions.
In contrast,under the Sakura Model, PALS do not use the licensed care-givers provided by public programs; instead they directly receive the welfare subsidies and start their own homecare businesses. PALS train and hire non-professionals as PAs, who soon become able to handle most of the PALSfdaily care-related needs,

5.         

6.        This is the weekly care plan of a Mr. Kato who lives with his wife and son in Tokyo. His wifefs job prevents her from attending to him in the daytime, but as this chart shows, he is able to receive round-the-clock care through the well-balanced use of three different programs. Over many hours, Over many hours ,PAs provide various services, such as helping Mr. Kato to suction, turn over, go to the bathroom, communicate, and operate his computer.

7.        A 24-hour care plan like the one used by Mr. Kato requires a large number of PAs to be trained. In order to provide this training, we created gEvolution of Care,h a course that we offer on a monthly basis. The curriculum is divided into nine hours of classroom instruction and eleven hours of practical training. In the classroom instruction, the participants study such things as communication skills, transfer methods, respiratory management, respiratory diseases, sanitary control, tube feeding, suction techniques, care-related welfare systems, bioethics, and empowerment methods. In the practical training, the participants practice suctioning and communication. The class size is limited to 40 students per month, and the 20-hour course can be taught in a period as short as two days. Tuition is \12,000 for members and \17,000 for non-members. The instructors are patients, members of their families, and medical and nursing care professionals from the local community. Nearly 460 PAs have completed the course since it was launched in September 2003.

8.        This shows some of the data we have compiled on our training program. One thing we have discovered is that many nursing students are interested in the course. In addition, licensed care workers have also participated in order to master suction techniques.

Our research on PALSf needs has revealed that they tend to prefer young female PAs. They hope for obedient, polite, responsive and concientious carers. One family has told me that the most important PA trait is having a relatively small body, since they live in a cramped house. Our research also indicates that the content of services, caregiversf skills, and the number of caregivers available differ significantly from region to region.

9.        In September  this year, nine PALS and a group of other persons with disability conducted negotiations with Tokyo Metropolitan Government disability welfare officials .As exemplified by this event, PALS who have gained independence through the Sakura Model are actively participating in the Independent Living Movement.

10.    @

11.    @

12.    Finally, I would like to summarize my presentation by saying

 SAKURA MODEL has solved the problems of

 A lack of non-family care givers,

 24-hour 365-day homecare by family caregivers,

 Financial hardships of PALS families.         

 SAKURA MODEL has improved the quality of care by

 Establishing a PA system for ALS,

 Considering all aspects of social support,

Allowing PALS to receive direct payments from the Community Care System,

Enabling PALS to employ their own carers,

Empowering PALS, their families and local medical practitioners.

‚P‚SA@ALS. Is it a disability, or is it a fatal disease? This is a question that we would like to explore by learning what we can from PALS who use the Sakura Model. One thing is certain, however: PALS have demonstrated that with the support of PAs, they can live independent, fulfilling lives.

This concludes my presentation. Thank you for your kind attention.