Making use of the employment support system – I became a working person

Hiroki Okabe
Consultant, Japan Amyotrophic Lateral Sclerosis Association
(Chair, Sakai Wo Koete NPO)

My disability

My name is Hiroki Okabe, and I am an ALS (amyotrophic lateral sclerosis) patient. I will begin with a simple explanation of ALS, the condition which I have. ALS selectively invades the motor nerves alone, and gradually, the voluntary muscles of the entire body become unable to move. It is a progressive neurological disease: there are variations between individuals, but in three to five years, the person becomes unable to breathe, and cannot go on living without a ventilator.

Although ALS disables the motor nerves, it is said not to affect the five senses such as sight or sound. Although the person is fully conscious, then, they slowly become unable to move their own body as they wish.

Because of this disease, we become physically disabled. Moreover, it is a severe disability recognized by the Ministry of Health, Labour and Welfare. It is an extremely cruel disease in which the individual has to decide for themselves whether to live once totally paralyzed or to give up living.

I developed ALS in 2006, and in 2009 I had a gastrostomy (February) and a tracheostomy and fitting of a ventilator (September). Having a tracheostomy three and a half years after the onset of the disease makes me a fairly typical patient.

At present, I can only move part of my right foot and my eyeballs. I communicate using a tool called a transparent communication board, with my helper reading my eye movements. I use this in my daily life, of course, but also to work, and to write texts like this one. I require total physical assistance, medical care, and a special form of communication, but I live independently in Koto Ward, Tokyo, with helpers 24 hours a day, 365 days a year.

The background to how I decided to run a nursing care office; the content of my work; and how my work was entirely voluntary until I became able to use the employment support system

Severely disabled people like me cannot live without helpers. I made the decision to live in 2009, but I was stunned to learn that I would need helpers and social resources (numbers of hours of home visit care for persons with severe disabilities) in order to live. It was a great shock, though not as great as developing the disease. This is because I understood that making the decision to live and being able to live were two separate things.

Living at home after my tracheostomy, I was overwhelmed every day by the need to coordinate shifts: it was a really difficult life, in which I felt as though I were living in order to receive nursing care, rather than receiving care in order to live. At that time, I strongly wished to create a nursing care office myself. This was because I wanted to do what I could to dispatch carers to my fellow ALS patients at the same time as building up my own care support structure, as well as increasing the number of carers for people with ALS and similar conditions, and improving their quality.

Six months later, I was able to find and recruit a person with whom I thought I could set up an office, and we did in fact set one up (this office has now been in existence for more than 13 years, and provides services to 3 – 7 users with ALS).

I am the company president, and so my job is not caring work, but running the company. The most important thing for a company’s business is providing clients with a reliable service and products. In the case of a nursing care office, this means providing care. It comes down to the question of how to provide care so that the people receiving it can live as safely and with as much peace of mind as possible. By making this a reality, the company’s business becomes stable and employees can be guaranteed secure wages and work. Valuing employees is a condition of providing good nursing care.

As well as the transparent communication board, I also use OriHime eye + Switch, which is operated by eye movements. However, the communication board is much faster, so I use it at work except for matters where privacy is a significant issue. First of all, I need a pair of people, one to read my communication board and one to scribe the letters (photo).

I devote around three to four hours to work five days a week, excluding Saturdays and Sundays, between 4 pm and 5 pm and between 9 pm and 1 am. I also go to work in the office once a week. I make use of the employment support system when travel to work, too.

I think that the understanding of the local government responsible for my area is a great help when it comes to using this system. My work consists mainly of having emails read out to me and sending replies, or giving orders regarding the running of the office (responding to issues with users, coordinating shifts, workforce management, cash management, and planning and implementing our income and expenditure). I sometimes also visit users’ homes myself.

Besides the management of my nursing care office, I am also an officer of a disabled people’s group and carry out peer support, awareness-raising activities (media relations, talks, and so on), and activities with the NPO which I set up. However, the only activities for which I received any payment were some of the talks and lectures: almost all my activities were unpaid (voluntary). This was because, even though working would have been possible with the support of a helper, using a helper at work was not permitted, and so I ran the nursing care office as a volunteer.

However, I became the first person in Tokyo to use a special project to support the employment of severely disabled persons, etc. through a collaboration with employment measures, from August 2021. I became able to work, receiving payment only for my work at the nursing care office.

What has been good about using this system, the current situation, and issues

I make use of this system as a sole proprietor. In this case, the system can be used if the office employing the helpers assigned to me during my working hours and the local government understand and cooperate. It is unnecessary to separate out help with daily living and working hours, so there is simply an increase in the office’s invoicing work. In reality, it has become possible to use this in a way close to that of home visit care for persons with severe disabilities.

By using this system, it has become possible for me to receive payment from the office which I run. In practice, I had been running it for over ten years, but I did so as a volunteer because home visit care for persons with severe disabilities cannot be used while working.

I require suctioning of sputum, tube feeding, management of my ventilator, and a special form of communication, and so round-the-clock care provision is essential: I need a helper even while I am working. By using this recent system, I have money for my own private use thanks to the ability to receive payment. However, for someone who is employed to make use of the employment support system, the understanding and cooperation of the corporation employing them are needed.

This creates a burden, so will employers actually make proactive efforts to use this system?

Moreover, there are areas in which the form of usage differs from home visit care for persons with severe disabilities. It is extremely difficult to separate out the time spent on care and the time spent working. Can we not make it possible to use the home visit care system for persons with severe disabilities?

I hear that one problem is with financial resources. However, I also hear on the other hand that because the notification about using home visit care for persons with severe disabilities, a disability welfare service, points out that studying and working are not permitted, there are limitations on its use. Is this not a major barrier for disabled people? This is why I believe that, if we aim to give disabled people opportunities to work, we need to make it possible for them to use home visit care for persons with severe disabilities when doing so.

Edited and published by the Japanese Society for Rehabilitation of Persons with Disabilities. Published on May 25th, 2023.