Chiho Kato
Director, Nagatacho Children’s Future Conference and
Policy Advisor for Members of the Diet

１. Introduction

In June 2021, the “Act on the Support of Children Requiring Constant Medical Care and Their Families” was enacted and was enforced on September 18, 2021.  At the time it was enacted at the plenary session of the House of Councilors, I was watching with great emotion from the audience seats, together with children with disabilities and their families and the members of the non-partisan “Nagatacho Children’s Future Conference” (hereinafter referred to as the “Future Conference”) [Note] which was the driving force for the promotion of this law.

Thanks to the advances of medical care, we can now save the lives of babies that otherwise could not have been saved in the past.  The number of children requiring constant medical care is growing, along with the development of medical devices, such as mechanical ventilators and gastric fistula.  According to a government’s estimate, the latest data show that such children are increasing at the rate of 1,000 per year, making the total number reach 20,000 in Japan.  As children grow up and reach school age, the issues of choosing a school and of parents having to attend to their children at school have become apparent nationwide.

This act was drafted based on the awareness that it is one of the most important tasks for Japan to create a mechanism to support child-rearing in society as a whole, to guarantee an environment where children may be born and raised with peace of mind, and where inclusive education is secured, particularly now that Japan is facing issues brought about by the ultra-low birthrate and the number of children requiring constant medical care.  Having been involved as a member of the secretariat since the launch of the 2015 Future Conference, let me explain concisely in this article the salient features and points of this Act from the perspective of having supported the entire deliberation process for over six years up to the enactment of the law.

2. “Support for family” was included in the name of the Act

In fact, it is very rare for a law to include “support for the family” in its name.  Representatives of persons with disabilities and their families have been members of the Future Conference since its inception.  We have listened to live feedback from many such families responding to system revisions and emerging issues during deliberations over the past six years.

It was last year and only one month before the end of the diet session that the bill was finally ready to be submitted after all political parties had completed their internal examination.  Success or failure?  It was like walking a tightrope.  It was the power of the mothers that achieved a breakthrough.  In front of many people from the mass media, when the mothers, who were holding photo panels of their children, handed the heavy signature book containing 30,000 signatures to the Chief Directors of the ruling and opposition parties of the Welfare and Labour Committee, the vibes of the venue changed.  It was the moment the door opened.  The “Act on the Support of Children Requiring Constant Medical Care and Their Families” was now a law we have created with the concerned parties.

3. Points and Features of the Act

The purpose of this Act is stipulated in Article 1, which states: “It is to establish the basic principles relative to the support of children requiring constant medical care and their families, clarify the responsibilities of the national and local governments, and contribute to the realization of a society where people can enjoy seeing  their children in good health, as well as helping parents keep their jobs while allowing them to bear and nurture their children with peace of mind through measures related to enhancing childcare and education, designating a support center for such children, and other necessary measures.”

Over the course of half a year, in the process of creating articles, many parts of the draft were converted into technical and legal terminology as a result of repeated consultations and coordination with five (5) government offices and ministries and the Legislative Bureau of the House of Representatives relative to the consistency with the existing system and legal system.  Thus, let me simply explain below the purpose and rationale of the Act.

This Act aims at the following:

• To establish an environment that guarantees inclusive education, by respecting to the utmost the intention of children requiring constant medical care and their families;
• To eliminate regional disparities;
• To increase options in their individual lives, including helping family members keep their jobs; and further,
• To support grown-ups who are still in need of constant medical care in the community and to create a society where everyone can live together.

As concrete measures to systematically secure these basic principles, the Act stipulates the following main points: the establishment of the Support Center for Children Requiring Constant Medical Care, the responsibilities of the national and local governments including financial measures, and the placement of nurses as a responsibility of the administrator of nursery and other schools.

For the first time, “children requiring constant medical care” was legally defined in the 2016 Amendment to the Services and Support of Persons with Disabilities Act and the Child Welfare Act.  However, the provisions stating an obligation to endeavor required of local governments alone were not enough in terms of the policies and budget on a national level.  Based on the conclusion that a specialized basis law for children requiring constant medical care is imperative to make a breakthrough, this Act has improved the provision from the conventional “obligation to endeavor” to “obligation to implement” on the part of the national and local governments.

4. To satisfy the children’s desire to go to school

The main point and feature of this law is the guarantee of the right to education and the resolution of the controversy surrounding many parents accompanying their children at school such that the desires of the children using ventilators to attend school and the intentions of the concerned parties are respected as much as possible by providing the relevant provisions.

Article 3 basically describes inclusive education, stating that, “Support relative to education shall be provided properly by giving maximum consideration to children requiring constant medical care so that they can receive education together with other children who do not require such care.  (…)  It must be carried out seamlessly in close cooperation between related agencies and private organizations.”

In addition, Article 10 clearly states that, “In order for children requiring constant medical care enrolled in school to receive the appropriate medical care and other support without the attendance of a parent or guardian, necessary measures shall be taken, such as the placement of nurses.”  “In order to secure human resources who can deliver constant medical care in school, other than nurses, necessary measures shall be taken to improve the physical environment of the school such that staff assigned there, such as certified care workers, can perform sputum suction, etc.”

The Ministry of Education, Culture, Sports, Science and Technology stated in the report (1) of the 2019 Expert Committee in regard to parents’ accompanying their children, “On the matter of promoting the independence of children, it should be done only when it is truly necessary,” which was a significant guideline.  However, COVID-19 has made it even more difficult to secure school nurses when it is already difficult for children whose both parents have jobs or those who come from “single parents” and thus cannot accompany them to school.

After many deliberations with the Ministry of Education, parents have taken a step forward by using a more flexible approach to secure human resources through multidisciplinary collaboration not limited to nurses, but by incorporating the phrase “certified care workers and the like”.  It is a manifestation of their strong political will to make real the kind of school education that does not presume constant care by the parents.

5. State of the movement after enforcement and future issues

Since enforcement began in September 2021, the movement toward the establishment of support centers for children requiring constant medical care has been spreading in each prefecture.  Although the government budget and the movement in Tokyo are ahead, the opening of such centers will allow people to receive support, such as consultation services, advice and information at a one-stop shop in cooperation with organizations in the community.

Sometime in the near future, a fact-finding survey on children requiring constant medical care (including grown-up children requiring constant medical care) will be conducted.  There are also considerations regarding how support should be given in case of a disaster.  In the government’s guidelines based on the Amended Basic Act on Disaster Management, the national policies and budget expansion have been steadily expanding since the enactment of the Act, such as the strengthening of evacuation support for children requiring constant medical care.

However, there are limits to jurisprudence.  For example, there is no enforcement of individual cases at school.  I hope that support centers for children requiring constant medical care will be set up in various places, and by assessing the status of individual children and acquiring knowledge about them, horizontal expansion of the network and the sharing of advanced cases will progress, which will lead to the elimination of regional disparities and the development of their welfare nationwide.

In this Act, there is a provision for a review three years after its enforcement.  There are institutional issues that could not be included in the scope this time, including the issues of the children’s whereabouts after graduation and their support for independence after the death of their parents, securing and training human resources for constant medical care through multidisciplinary collaboration, and the transition to adult medical care and support for siblings.  For these issues, we will continue to hold discussions with colleagues at the Future Conference and prepare for the next amendment of the Act.

[Note] An impartial study group comprising non-partisan members of the Diet, including Ms. Seiko Noda, a member of the House of Representatives and a mother of a child requiring constant medical care, and experts on home-based medical care and welfare from related ministries, private sector and NPOs, and persons with disabilities and their families.

[Reference]

(1) Ministry of Education, Culture, Sports, Science and Technology
 “Study Meeting on the Implementation of Constant Medical Care in Schools (Final Summary)”
https://www.mext.go.jp/a_menu/shotou/tokubetu/material/1413967.htm