A step toward community activities for people with ALS
living at home using personal assistants
Yoo Jinkyung(Doctoral course, Ritsumeikan University Graduate School of Core Ethics and Frontier Sciences)
What is a personal assistant?
A “personal assistant” is a person who provides assistance based on the wishes of the person with a disability. It is also referred as a ‘self-nominee helper’. The more you
become a good employer and the better you make use of your personal assistant, the better service you will receive and the better your quality of life will be(SATO 2014).

About social support systems

What is ALS?

When someone has ALS（Amyotrophic lateral sclerosis), even though their cognitionis very clear, their motor neurons (nervous system for moving your body) stop
working. First, their muscle strength gradually decreases and symptoms of muscularatrophy, paralysis, and speech disorder appear. Next, their breathing muscles
become weak, leading to respiratory difficulties. Even with today’s modern medicine, it is impossible to provide an effective cure and expect the illness to go away. But
the development of medical devices such as gastronomy tubes and artificial
respirator machines are helping to extend long-term survival. However, there are
only a few facilities where patients can be hospitalized for a long time, and staying
at home requires nursing care 24 hours a day, 365 days a year. The physical, mental,
and economic burdens on families are also heavy.

Two social support systems are available for people with disabilities.
Long-Term Care Insurance covers elderly people, but ALS can also becovered as a specific disease. However, the term of this coverage is
too short to be adequate.
Visiting care for persons with severe disabilities is another welfare
service for persons with disabilities. The desired amount of nursing
care time is not always granted, but if it is approved it is possible toreceive care services 24 hours a day.
One step toward community activities:

Hideaki Masuda

 Reasons for Choosing Personal AssistanceIntroduction• As I was using only nursing insurance at that time, I couldn’t go out when Iwanted. When I found out about welfare services for severe disorders, I wantedto use it. I call my ‘self-nominee helpers’ personal assistants. Because their work
is related not only to my daily life, but also to my every activity in society（Masuda 2013）.

2004. Onset of ALS at 60 years old (Unable to move his body after 1 year)
2006.2. Difficulty breathing, introduced a BIPAP.
Difficulty swallowing, installed a gastronomy tube
2006.5. Got a tracheostomy, installed a respirator
2006.8. With the respirator, started staying at home2011. Started living independently with personal assistance
Currently 75 years old, Japan ALS Association / Kinki Block Chairman,
Japan ALS Association Vice President,
Ritsumeikan University Visiting Researcher

The progress of working with a personal assistant
BeforeHiringWhileworking• People with ALS, patients with intractable diseases, and people with severe
disabilities who are unable to move their entire body need a helper 24 hours a
day in almost every aspect of their lives. Family care alone is not enough, and it
is not possible to respond to the patient’s needs as the illness progresses with
only short-term care insurance. In order to improve the quality of life under astable nursing care system, we have introduced an approach of finding andtraining helpers suited to our needs (Masuda 2019).

Recruitment（creation and distribution of flyers）→ Interview at home →Completion of visiting care for persons with severe disabilities training → Hiring
Each personal assistant submits monthly shift requests by email(by the 25th of the previousmonth) → Mr.Masuda arranges the schedule and sends individual notifications by e-mail→ Work is carried out

Graduation Graduation from school marks the end of working as a personal assistantThe ways of using personal assistantsin the house(support for routines in daily life)

Activities outside the home

• Body Assistance : Exercise for postural change, suction, oral

• Cultural leisure activities : going to music concerts andmovies related to disabilities and intractable disease• Walking/Shopping : Taking a walk by the river near hishome or buying lottery tickets at the end of the year
• Participation in social gatherings• Overnight stays : Especially when attending academic• conferencescare, washing the face, changing clothes, eating(gastronomytube), support in daily life such as changing diapers.
• Work Assistance : Set up a personal computer and mouthswitch, read books and mails, print assistance.
• Supervision : Not possible with long-term care insurance,
but possible with intensive home care.

“Eating witha gastronomy tube”

Community Activities

本人• University and symposium lectures : Giving lectures on communication
support, intractable diseases and medical care
• Attending and presenting at conferences : Participating in disability
symposia and overseas (Korea and Boston) academic conferences,presenting posters and giving talks• Research Group : Establishing of and participating in abarrier-free research group• ALS Association Activities : Attending various association
activities such as the regular board meeting by traveling“Poster presentation at
directly from Kansai to Tokyo or participating via Skypethe International Society• Peer Support: ALS and colleague consultation on intractable meeting in 2017”
disease＊All manuscript and PowerPoint documents required for these activities were created by Mr.Masuda with a mouthswitch connected to a personal computer.

Conclusion“2018 Birthday Party”

Contributing to society• Hiring only university students as personal assistants:
Employing students from nursing departments, socialwelfare departments, health departments, etc. to provide
a wealth of on-site experience allowing them to gain
expertise and to support them in viewing people not only
as patients or the disabled.
Example) Practicing providing medical care with an Ambu bag• Record so far (August 2019):
16 people are active as personal assistants for Masuda. Approximately
52people have graduated and are working in hospitals (as nurses),
government offices, and welfare organizations

Depending on who is the agent in control of care, people with intractable diseases can perform varioussocial activities.
This example can also motivate other people with intractable diseases to conduct new social activities.

＜References＞
Yoko Ito, 2014. “Life support and personal assistant for people with severe disabilities in Japan”. Bulletin of Faculty of Contemporary Sociology, Chukyo University 8, 1-18.
Hideaki Masuda, 2013. “<Lecture> A Step toward Independence with Self-Recommended Helpers”. “Japan ALS Association Kinki Block Bulletin” 74.
Hideaki Masuda, 2019. “Personal assistant work”