What are children with medical care needs?

I think many people have heard the term but don't know exactly what it means.

Against the backdrop of medical advancements, children who require daily medical care after long-term hospitalization in facilities such as the NICU (Neonatal Intensive Care Unit) are called children with medical care needs.

Since they require continuous medical procedures and care, it goes without saying that support for their families is also important.

In this article, we will explain what children with medical care needs are.

1. Overview

(1) What are children with medical care needs?

Children with medical care needs are children who require daily medical care.

Specifically, this refers to children under 18 who require continuous medical procedures for life support or health management, such as those using ventilators, gastrostomy tubes, phlegm suction, tube feeding, or home oxygen therapy.

(2) Main characteristics

• Types of disabilities: Severe motor and intellectual disabilities, muscular diseases, neurological diseases, congenital diseases, chromosomal abnormalities, etc.

• Content of care: Medical procedures that would normally be performed by doctors or nurses are performed daily at home or school by guardians or caregivers.

• Living environment: Currently, home care is the norm, but some may use medical-type residential facilities for children with disabilities or short-stay services.

* Since the burden on families and caregivers inevitably increases, it is important to utilize services like short-stays to allow caregivers to take a break.

* Medical-type residential facilities for children with disabilities are almost always full and have waiting lists. It can take several years to be admitted even after applying. Therefore, it is often necessary to apply with a view several years into the future.

2. Background and Systems

• With the 2016 revision of the Child Welfare Act, the term "children with medical care needs" was explicitly stated in the law and positioned as a target for support.

• In 2021, the "Act on Support for Children with Medical Care Needs and Their Families" was enacted, strengthening consultation support and responses in childcare and educational settings.

* The "Act on Support for Children with Medical Care Needs and Their Families" aims to promote the healthy growth of children with medical care needs, prevent their families from having to leave their jobs, and contribute to the realization of a society where children can be born and raised with peace of mind.

3. Examples of support

• Visiting nursing: Nurses visit the home to provide care and family support.

• Support at school: In some cases, the placement of nurses or accompaniment by guardians is permitted.

• Community support: Municipal "Support Centers for Children with Medical Care Needs" and consultation counters.

* There is also a movement to train specialized support staff, and you can view the training text for coordinators for children and persons with severe motor and intellectual disabilities on the Ministry of Health, Labour and Welfare's website.

4. Summary

In simple terms, children with medical care needs are recognized as children who require medical equipment or care due to illness or disability, and who, along with their families, should be supported by society as a whole.

It is estimated that there are approximately 20,000 children receiving medical care at home nationwide, and this number is increasing year by year along with advances in medical care.

We hope you will take an interest in the systems for these children who require support, so that we can create a society where they can grow up healthily even if they require daily care, and a society where guardians can give birth to and raise children with peace of mind without being overwhelmed by the burden.