MATSUMOTO, Wakako Matsumoto
Head Nurse, Ginga (Specified Non-profit Corporation)

Introduction of Our Organization

Our organization, “Ginga,” is located in Hirosaki City in western Aomori Prefecture, famous for apples and cherry blossoms.  In 2013, we opened an after-school day service establishment.  Currently, we have one welfare-type child developmental support center and five after-school day service establishments, including the ones in neighboring municipalities.  We are managing a total of seven establishments (Table 1).  With our leader’s vision of “becoming a pioneer in the field of child development support,” we endeavor to provide support to children by being attentive to details and by being sensitive to the needs of each child.  At the same time, we try the “rehabilitation approach” to help our children build a foundation and acquire skills to live on their own (independently and in a self-determining manner) focusing on the present and the future, so that the philosophy of welfare, which is “Everyone lives in the community just like everyone else,” can be realized.  In 2019 our organization started accepting children requiring constant medical care at full scale, and is making efforts to play a central role in multidisciplinary cooperation in community welfare, childcare, education, and medical care.

Table 1 Service Details of Ginga (Specified Non-profit Corporation)

※ The establishments in bold letters are the ones that accept children requiring constant medical care.

About Children Requiring Constant Medical Care

The theme of this article, which is “Children requiring constant medical care,” means that there are children (including high school students aged 18 and older) needing constant medical care (respiratory management with a respirator, sputum aspiration, and other medical procedures) in order to lead a social life daily (*1).  With the progress of medical technology, the number of such children has increased rapidly, and now there are more than 20,000 nationwide.  The current issue is that such children do not receive disability welfare services upon leaving the hospital and only the family members support them.  This issue has surfaced, and the need to strengthen the service provision system for children requiring constant medical care and their families has led to this subsidy revision.

About the Subsidy Revision

The main points of this subsidy revision are: (1) the creation of a basic subsidy according to the new assessment score, and (2) the review of the calculation requirements for additional nursing staff.  Six months have passed since the revision.  We can see that because the basic subsidy has been increased, it is now possible to receive support in the areas where medical care had not been subsidized.  In addition, it is now scored according to the severity of the conditions of persons requiring medical care, and nurses are now required to be assigned according to uniform criteria (less than 15 points, 16-31 points, and 32 points or more); thus it is expected that support for children requiring constant medical care will be enhanced.

If we look at our organization relative to (1) above, due to the introduction of the new assessment score, the subsidy unit rate has more than doubled from the previous 830 to 1,885 units for children with 16 points or more.  However, regardless of the subsidy revision, since few facilities in the entire region can accept such children, I think that the number of children our organization will have to accept will continue to increase in the future.

Regarding (2), our organization is not subject to the calculation requirements for additional nursing staff.  Regardless of whether or not there is such a requirement, currently two full-time nurses are assigned to each of our establishments; and even if the number of users increases in the future, I do not think we will be in a state where we have to hire additional full-time nurses.

Stabilization of Management and Future Issues

You may think that the management is now stable because the subsidy revision has been done and the basic subsidy has increased.  However, there is no guarantee that everything will continue under the same conditions.

There are two major conditions that sustain the management, and if any one of them is missing, I do not think that management stability can be achieved.  One is being able to secure nurses and enhance their quality.  Even if we hire nurses for the sake of acquiring a certain number of them, if you do not have nurses who are experienced in dealing with children who need constant medical care, your establishment will not be in the state of being able to accept and give support to those children.  After all, I believe that it is a worry-free and secure place that wins the confidence of our clients.  To create a place where our clients can say, “I’m really glad I belong here!”,  it is imperative to acquire nurses experienced in dealing with children.  On the part of nurses newly hired in this field, they need to make use of their work experiences in the field of welfare.  From my experience, there are sometimes differences in perspectives between welfare and medical care.  Different perspectives may make them feel an inner conflict between the ideal and the reality, and if they are not willing to accept, or sometimes endure, and overcome this gap, they end up quitting before reaching the point of improvement.  We must train them over the long term so that they can perform their tasks from the perspectives of both welfare and medical care.

The second is to secure for the children requiring medical care the number of uninterrupted days they can avail of our services.  Since the subsidy is calculated on the basis of daily use, if the number of days decreases due to a client’s hospitalization because of sickness, for instance, it will naturally lead to a decrease in our income.  As the number of days our facility is being used is clearly determined by each individual, it is not easy to fill in the days of their absences.  It is necessary to be aware of this current situation and find a way for subsidy to cover such number of days and to be prepared one or two steps ahead.

With the enforcement of the Act on the Support for Children Requiring Constant Medical Care from September 18, 2021, the provision of support for such children has been clearly stipulated in the law as the requirement to implement, which previously had been merely an obligation to endeavor.  With this stipulation in the law, the enhancement of the system of accepting such children is now called for.  For our organization, “fulfilling our obligation” means accepting the ideas and hopes entrusted to us by the children’s families, and making efforts to support the children’s development so that they can live their lives to the fullest “their way” now and in the future.  To that end, there is a limit to what one organization can do.  I think we, including the national and local governments, have to work on the following to stabilize the management of welfare organizations in the pursuit of giving the best to the children:

1. Acquiring nurses and improving their quality; as well as the provision of subsidies to the facilities and establishments that receive children requiring long-term medical care
2. Provision of subsidies for capital investment, including the purchase of equipment in time for the opening
3. Compensation when there is no long-term use of facilities

Conclusion

Lastly, I would like to talk about myself. Originally, I was working for the pediatrics department of a university hospital.　While I was meeting and interacting with children requiring constant medical care and their families, I was faced with the situation where there is no place for the children and families to connect to the community, which led me to work in this organization. Here, I was able to create a place that accepts such children in the community.  Our organization trains nurses who can provide medical care and education, and I myself am constantly thinking about how to progress developmental support together with constant daily medical care.  Sometimes I come up against a brick wall, but our children’s smile and growth help me do my best, which leads to my own growth.  Children born to this world, with or without disabilities or illnesses, have the right to life, to grow up, to be protected, and to participate, as stated in the Convention on the Rights of the Child, and I think they have the right to be happy.  Such fundamental rights must not be lost.  Bearing in mind that it is my role to protect the place that guarantees these rights, to support the children as they acquire experience, to enable them to live life every day as they choose, and to allow them to dream about their future, I will continue to face up to my responsibilities.  To those who share the same conviction with me, let us do our best together!

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(*1)

 “Act on the Support for Children Requiring Constant Medical Care and Their Families” Overview of the “Act on the Support for Children Requiring Constant Medical Care and Their Families”

Ministry of Health, Labour and Welfare, Social Welfare and War Victims’ Relief Bureau, Disability Health and Welfare Department, Disability Welfare Division

[Reference]

Main Points of FY2021 Subsidy Revision of Disability Welfare Services Implemented from February 4, 2021, Ministry of Health, Labour and Welfare

• Main Points of FY2021 Subsidy Revision of Disability Welfare Services
• Enhancement of Support for Children Requiring Constant Medical Care (Overall Picture)
• Creation of Basic Subsidy for Children Requiring Constant Medical Care (Support for Outpatients with Disabilities)