Yu Hiranuma
NPO Chubu Independent Living Center Navi/Higashisumiyoshi Ward Core Consultation Support Center for Persons with Disabilities

Introduction of the organization and activities held

NPO Chubu is an organization formed from the Aoi-shiba-no-kai (Green Grass Association), an organization of people with severe disabilities who are motivated to remain active under the Independent Living Movement. Currently, Chubu operates a variety of welfare services for persons with disabilities and is, thus, entrusted by Osaka City to operate a core consultation support center. I will not go into details, but it happened that the Independent Living Movement, which began in the U.S., was merged with the movement of persons with disabilities in Japan. In Osaka, consultation support services are entrusted to organizations of persons with disabilities. The fact that peer counseling is included in the consultation support services is a byproduct of such a movement.

A helper dispatch system called Visiting Care for Persons with Severe Disabilities is one of the welfare services for persons with disabilities. It is one of those systems that was established through the efforts of persons with disabilities active in the movement. This system includes not only fixed-time care such as eating and bathing, but also watching over the person who needs intermittent assistance, such as toileting, hydration, and just standing by. Visiting Care for Persons with Severe Disabilities can provide fastidious support for things that able-bodied people tend to take for granted and do not notice, such as turning pages when reading a book or taking notes when answering the phone.

A major turning point in the provision of support for employment of persons with severe disabilities

The Special Program for Employment Support for Persons with Severe Disabilities in Collaboration with the Employment Policies (hereinafter referred to as the “Employment Support System”) allows all persons with disabilities to work if they so wish, while providing the necessary accommodation. This system provides a pivotal role for enabling persons with disabilities to choose their work; and although there are still many issues to be addressed, I think we can say that the employment environment for persons with severe disabilities has fundamentally changed from what it was in the past. However, we do not consider at all the current Employment Support System to be a complete system. What we ultimately aim at is a personal assistance system. Ideally, we would like to have a seamless system where people can get whatever support they need, whenever they need it, and use it at any time and in any situation. Whether a person is at work, studying at school, or resting at home, it is still a part of the person’s daily life. The helper who provides support should be someone who is familiar with the person’s condition. Basically, the activities the person is engaged in has nothing to do with the boundaries between the systems. Specifically, what we are after is that the use of the services provided by Visiting Care for Persons with Severe Disabilities should not be determined by where we are or what we do.

The target of this Employment Support System are people who are eligible for the Visiting Care for Persons with Severe Disabilities (including companion support and activity support). Osaka City has the highest number of users of Visiting Care in the country. Because of the movement of people with disabilities in Osaka, there are many people with severe disabilities who live in the community, and many of them are working. At a national conference in March this year, there was a report on how many municipalities are implementing this system. According to the report, out of the 70 users nationwide, 24 users are in Osaka City. While other municipalities have single-digit numbers of users, the number of users in Osaka City was truly remarkable.

In our organization, we have two staff members who use this system. Their main job is to provide consultation and answer phone calls as staff members of the Core Consultation Support Center for Persons with Disabilities. Another job of theirs is to give lectures and prepare materials for lectures relative to their own disabilities. They also play a leadership role in planning and organizing programs for persons with disabilities who want to become independent.

Employment Support System: Current status and issues

Previously, the only way for workers with disabilities to obtain an assistant was through the “Workplace Assistant Subsidy,” under which companies hired a “workplace assistant” and a portion of the assistant’s salary was subsidized. The subsidy used to be limited to 15 years, and the employer (management) was not allowed to use the subsidy from the perspective of employment promotion. The assistants’ assignment was fixed in the sense that one assistant was not allowed to replace the other. The administrative burden on companies to claim subsidies was also quite heavy. Since public transport services were not available, workers had no choice but to commute to work by themselves, either with family members, volunteers, or alone at their own risk

Under the new Employment Support System, the 15-year limit has been removed, persons in the management can also use the subsidy, and the services can now be outsourced to a helper dispatch agency, such that a helper is available at the workplace through the helper dispatch system. Commuting is now covered, too. However, because the employment system is linked to the welfare system, there are many hurdles. There is a difference between the employment system, in which a subsidy is given to companies, and the welfare system, in which a subsidy is given to individuals. In addition, the biggest difficulty is whether or not the municipality in which the person lives provides the services of the Employment Support System. Moreover, the employer is now required to pay for some expenses that were not required before.

As the scope was extended to management, it may seem natural that users are now required to share the cost of the government’s helper dispatch system. However, persons with disabilities who receive daily care bear the cost of using each system, and the more types of systems they use, the more the cost burden increases, thus creating pressure in their daily life.

However, the government providing the administrative service may also be unsure as to what extent and whom it should support. Under the concept that not giving reasonable accommodation constitutes discrimination, it may be right to say that the provider of accommodation should be the companies employing persons with disabilities, making it unclear whether the government is supporting persons with disabilities or companies. Personally, I would like to see both individuals and companies being given assistance to create an inclusive society where anyone can live as they wish.

Testimonies from our staff members with disabilities who use the systems

Mr. Tsuruha – a man with muscular dystrophy and an electric wheelchair user. He has a severe physical disability. He can use a mouse, but otherwise requires full assistance. “During my college years, job hunting was so tough. What I experienced is something able-bodied persons could never relate to. When it came to job hunting in general private companies that hire persons with disabilities, the reality is that only persons with relatively mild disabilities (e.g., those who can move their upper limbs, those who can use the restroom by themselves without an assistant, etc.) can reach the interview stage. When I was in college, there was a preliminary job interview for persons with disabilities at MyDome Osaka (an exhibition hall). The companies set up booths where we had interviews. There was a time when the person in charge of the interview did not accept my resume apparently because I had a severe disability. Another time, even if they accepted my resume, I could not reach the main interview at the next step for the reason that providing care might be difficult. In another preliminary job interview, I was turned down in a roundabout way. I thought at that time that there was no longer any point in trying. If the current Employment Support System existed at that time, I would have been able to work without worrying about an assistant care, and my job hunting activities would have been more extensive.

Ms. Azuma – a lady with congenital skeletal dysplasia + spinal cord injury + hard of hearing (right ear only): “My limbs are short and my range of motion for activities is narrow. Because I also have spinal cord injury, I use a catheter for toileting, and need full assistance in case of incontinence. I am hard of hearing and sometimes need assistance when I cannot hear. I work every day from Monday through Friday. When I work in the office, I ask for an assistance, as needed, such as getting documents from high places or picking up things that have fallen on the floor. When I go on a trip, such as for giving a lecture, I am accompanied by a person who provides me with necessary assistance. I also work overtime. The office also has a contract within the Employment Support System, so for an assistant under the Visiting Care for Persons with Severe Disabilities I can use the Employment Support System. I am very grateful for that. Before, even in the workplace, I was not able to work overtime and had to work only during fixed hours. Now that I can use an assistant for urgent overtime work and work at home, I can do more work for longer time. The only problem is that this system is not implemented in all municipalities. I hope that this system will soon be available in all municipalities.”

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