Kazuhiro Shimokawa
The Laboratory of Community, Caring and Support System
(Specified Non-profit Corporation)

1. Introduction

The “Act on the Support for Children Requiring Constant Medical Care and Their Families” (hereinafter referred to as the “Act on the Support for Children Requiring Constant Medical Care”) was passed by the Diet on June 11, 2021, promulgated on June 18, 2021 and took effect on September 18, 2021.  This Act is a law that was established 33 years after the issues of children requiring constant medical care became apparent in school education and 30 years since the emergence of the word “constant medical care.”  In this article, I will trace the history and describe the background and expectations of the enactment of this law.

2. Social Trends Relative to “Constant Medical Care”

I will introduce the endeavors to establish the “Act on the Support for Children Requiring Constant Medical Care” in five phases.

(1) Phase 1 (〜1997): Emergence of the word “Constant Medical Care” - Manifestation of issues and emergence of the word “Constant Medical Care”

On April 27, 1988, the Tokyo Metropolitan Board of Education announced their views that “the school attendance for certain children/students who require sputum suction, tube feeding, etc. shall be done in principle by visiting their homes.”It was then that the issues at school manifested.In those days, these kinds of care were referred to in various ways such as “medical practices,” “acts similar to medical practices,” “activities of daily life” and the like.

The word “constant medical care” was mentioned for the first time in a local government’s document when it appeared in the report on the “Examination Committee on Cooperation with Medical Institutions” prepared by the Osaka Prefectural Board of Education in 1991.It is a word that emerged in the field of education as teachers underwent training and carried out such “medical care” at school which was performed by family members of such children at home as “part of educational activities in the field of education” (1).At that time, the “Home-visit Nursing System” had not begun yet.The “Home-visit Nursing Service” for persons with severe disabilities started in 1994.

(2) Phase 2 (1998-2004): A time of confusion in medical care, welfare, and education

In 1998, the Ministry of Education, Science and Culture began a “Practical Research on the Synergy between Special Education, Welfare, and Medical Care” in which teachers play the part of providing “constant medical care” under the support of nurses.Initially, the research was supposed to reach a conclusion in two years and the program was to be implemented.However, in September 1999, the Management and Coordination Agency issued an administrative recommendation to the Ministry of Health and Welfare stating that “Home helpers should be able to perform as wide a range of activities as possible related to physical care”.The Japanese Nursing Association strongly disputed the matter; hence, the focus of research shifted to the creation of a system centered on nurses.In March 2002, the Collaboration Council of the Ministry of Education, Culture, Sports, Science and Technology and the Ministry of Health, Labour and Welfare compiled the “Home-visit Nursing Scheme” and included it in the FY2003 budget appropriation request, but it was not granted.

What prompted the next phase was a petition to the Minister of Health, Labour and Welfare made by the Japan ALS Association on November 12, 2002.On June 9, 2003, the “Sub-committee on Home Care Support for ALS Patients by Nurses” established by the Ministry of Health, Labour and Welfare, compiled a report which created a practice based on “justifiable non-compliance with the law” – an interpretation of the law that, under certain conditions, non-medical personnel are allowed to do, for example, sputum suction and other simple medical procedures as needed.On September 17, 2004, “A Summary of Medical and Legal Aspects in Schools for the Blind, Deaf, and Special Schools” was issued, and thus the direction of how constant medical care should be done in schools for persons with disabilities was determined.

(3) Phase 3 (2005-2011):  A period when acts were based on “justifiable non-compliance with the law”

In 2005, government notifications based on “justifiable non-compliance with the law” were issued, such as notifications on measures for ALS patients who are not home-based and measures for special nursing homes for the elderly in 2010.Also, notifications regarding the interpretation of Article 17 of the “Medical Practitioners’ Act”, Article 17 of the “Dental Medical Practitioners’ Act”, and Article 31 of the “Act on Public Health Nurses, Midwives, and Nurses,” which in principle enumerate non-medical acts, were issued in 2005.

Around this time, issues in fields such as emergency and perinatal medical care in newborns, a lawsuit on the admission of a girl with tracheostomy to a nursery school, and gastrostomy in the elderly became apparent.In 2010, the “Study Group onthe Implementation Procedure of Sputum Suction by Long-term Care Staff” was established by law to study the work of care workers, and then the “Certified Social Worker and Certified Care Worker Act” was established (revised in 2012).Furthermore, on December 20, 2011, the Ministry of Education has issued a notification on the “Future Activities of Constant Medical Care at Schools for Those with Special Needs.”

(4) Phase 4 (2012-2015):  A period of action based on the law

Following the legislation for constant medical care in 2012, the Ministry of Education has summarized the differences from the past (Table 1).

On the other hand, a notification from the government conveyed technical advice stipulated in Article 245-4, Paragraph 1 of the Local Autonomy Act (Act No. 67 of 1947).Since notifications are not strongly enforced, there were variations in the implementation depending on the local government.

(5) Phase 5 (2016-2020):  A time showing the ripple effect of the ratification of the “Convention on the Rights of Persons with Disabilities”

As part of the development of domestic legislation for the ratification of the “United Nations Convention on the Rights of Persons with Disabilities” (2014), the “Act for Eliminating Discrimination against Persons with Disabilities” was established (2013) in the field of welfare.In the educational field, partial amendments to the “Enforcement of the School Education Act” (2013) were made.The Ministry of Education announced the results of a fact-finding survey on the parents’ attendance in the school life of children with disabilities (October 22, 2015) and parents accompanying their children in elementary and junior high schools, which will continue to be an issue in providing reasonable accommodation; thus, they have included regular elementary and junior high schools in the support project for the placement of nurses in special needs schools from FY2016.

On June 3, 2016 when the partial amendment of the Child Welfare Act took effect, a government notification was issued on “Health, Medical Care, Welfare, and Education in Support of Children Requiring Constant Medical Care.”Furthermore, based on the report of the Conference on the Implementation of Constant Medical Care in Schools established by the Ministry of Education, a notification on the “Measures to Implement Constant Medical Care in Schools” was issued on March 20, 2019.

On the other hand, in 2018, a lawsuit alleging violation of the “Act Eliminating Discrimination Against Persons with Disabilities” was filed while the Japan Federation of Bar Associations issued their opinions on the matter of“Childcare and Education for Children Requiring Constant Medical Care” (September 21, 2018).Under the amended Child Welfare Act, to support children requiring constant medical care was an “obligation to endeavor” for local governments; thus, there have been regional disparities in endeavors.

3. Establishment of the “Act on the Support for Children Requiring Constant Medical Care” and Future Issues

While support for children requiring constant medical care was an obligation for local governments to endeavor under the amended Child Welfare Act, the Act on the Support for Children Requiring Constant Medical Care states that it is the responsibility of both national and local governments.  Here, I would like to describe some future issues:

(1) Supplementary resolution of the Act

During the bill deliberation, the Welfare and Labour Committees of both House of Representatives and House of Councilors made an incidental vote (Table 2).It is hoped that the issues shown in the supplementary resolution be dealt with.

(2) Expansion of supporters and the essential definition of “constant medical care”

Article 2 of the Act on the Support for Children Requiring Constant Medical Care defines words by the types of medical practices, defining “constant medical care” as “respiratory management with a respirator, sputum suction and other medical practices.”Perhaps because of this, in recent government documents and reports, the expression “constant medical care performed by nurses” has become known.However, the words describing the practice done by non-medical teachers is “constant medical care”, whereas what nurses do is called “medical practice.”It is a confusion of terms caused by the lack of an essential definition of “constant medical care.”In the future, it will be imperative to expand the number of supporters, and during discussions, it is important to have the essential definition of the term “constant medical care.”

4. In conclusion

In December 2000, the “National Federation of PTAs of Schools of Orthopedic Students” compiled essays on parents’ hopes for their children requiring constant medical care, entitled “How long should we have to wait?” written by 19 parents to help concerned organizations deepen their understanding.  I hope that this Act on the Support for Children Requiring Constant Medical Care will take measures to respond to the hopes of parents who wrote those essays more than 20 years ago.  For the implementation of this Act, I also hope that the historical process will be thoroughly researched.

Table 1: 
Comparison of before and after legislation concerning sputum suctioning performed by teachers

Table 2:  Outline of the incidental resolution by the House of Councilors, Welfare and Labour Committee (June 10, 2021)

[Reference]

(1) Matsumoto, Kaichi “A Snippet of Constant Medical Care - from a Private Historical Perspective”  Constant Medical Care: History, now, and towards the future (edited by Osaka Nursing Education and Medical Study Group), published by Creates Kamogawa, pp. 74-85, 2006