Overcoming the 18-year-old barrier to provide "rest" and a "future" to families of children with medical care needs: Our commitment to promoting support for families of children with medical care needs nationwide
Children with medical care needs who cannot use severe home care services
Children who require medical care such as suctioning of phlegm or tube feeding 24 hours a day, 365 days a year (children with medical care needs), and their families. The daily lives of these families, said to number over 20,000 in Japan, are constantly side-by-side with "caregiving."
Parents cannot take their eyes off them for even a moment, and they cannot sleep because they have to perform suctioning every few tens of minutes throughout the night.
One of the parents is naturally forced to choose to resign from their job.
Parents have less time to spend with siblings.
These and other factors create a high-burden environment that has become a major issue.
At "Ustyle Care Severe Home Care," which operates one of the largest severe home care businesses in the country as a specialized provider for severe disabilities and intractable disease care, we have heard the heartbreaking voices of these families.
The disability welfare service known as "Severe Home Care" is a service that enables long-term home care for individuals with the most severe disabilities and intractable diseases.However, the target is limited to those aged 18 and over, meaning children with medical care needs cannot use severe home care services.
The Act on Support for Children with Medical Care Needs (official name: Act on Support for Children with Medical Care Needs and Their Families) was enacted through member-sponsored legislation in June 2021 with the aim of strengthening support for children and individuals with medical care needs who live while receiving medical care such as tube feeding and artificial respirators.
A cross-party parliamentary league is showing signs of intensifying discussions in 2026 toward the implementation of a full revision of the "Act on Support for Children with Medical Care Needs" in fiscal year 2027. One of the major focuses of this amendment is the elimination of the "18-year-old barrier" that prevents smooth support for children and individuals with medical care needs.
However, even while waiting for legal amendments, families on the front lines are reaching their limits.
If severe home care cannot be used, could we enable long-term support for families of children with medical care needs using "In-home Care," a disability welfare service that is usually intended for short-term use and is also available to those under 18?
We at Ustyle Laboratory have been accumulating a track record of long-term use of in-home care for children with medical care needs since 2017.
"Medical Care Needs Child Support Project": Promoting support from the front lines together with the government
Ustyle Laboratory has been focusing on the Saitama Prefecture area toprovide long-term support to families of children with medical care needs by maximizing the framework of "In-home Care." This is an extremely rare initiative nationwide.
To date, there have been approximately 20 cases of long-term use of in-home care for children with medical care needs. Currently, there are about 20 users, mainly children under 10 with medical care needs. There are also infant users aged 0 to 1. We have found that there is a high need for nighttime monitoring support.
In 2025, we established the "Medical Care Needs Child Support Project" within our company to spread this model nationwide. The project team is focusing on three axes.
Extracting support needs of families of children with medical care needs nationwide
Providing concrete information to welfare and government officials
Providing information and policy recommendations to the government, including the Tokyo Metropolitan Government
<Extracting support needs of families of children with medical care needs nationwide>
The first thing we did was to review all past consultation cases received at our offices nationwide.
We re-examined cases where support had to be abandoned because the child was under 18, and reached out to those families again.
We have actively participated in venues where we can hear the raw voices of parents, such as events held by the national organization "National Medical Care Line (i-Line)" and study sessions held by local support groups. What became clear there, along with the hope of removing the 18-year-old barrier for children and individuals with medical care needs, wasthe desperate voice saying, "I need help right now, at this very moment."We also conducted interviews with medical care needs child support centers, consultation support specialists, medical institutions, and local visiting nursing services at all approximately 50 directly operated Ustyle Care Severe Home Care offices.
<Providing concrete information to welfare and government officials>
Based on our track record of over 20 cases in Saitama Prefecture, we created a collection of support cases and provided it to welfare and government officials. In addition, at our monthly online "Ustyle Care Severe Home Care Seminar", we set up a session themed on support cases for children with medical care needs. More than 200 consultation support specialists and support professionals from all over the country applied to participate in this session, and we realized the high level of interest.
<Providing information and policy recommendations to the government, including the Tokyo Metropolitan Government>
We spent over half a year exchanging information with stakeholders, lawmakers, and government officials who share our commitment to supporting families of children with medical care needs.
Through the Tokyo Branch of the National Association of Long-term Care Providers, Disability Welfare Division (Branch Manager: Ken Ohata, Representative Director of Ustyle Laboratory Co., Ltd.), and as an operator of home care sites for severe disabilities and intractable diseases, we have confirmed with the Tokyo Metropolitan Government Bureau of Social Welfare and Public Health that support for families of children with medical care needs can be promoted more concretely by utilizing the current system.
And on December 19, 2025,the Tokyo Metropolitan Government issued a groundbreaking notification promoting the "long-term use of in-home care" titled "Regarding Considerations in Determining the Provision of In-home Care for Children with Medical Care Needs".
With this notification issued by the Regional Life Support Division of the Bureau of Social Welfare and Public Health of the Tokyo Metropolitan Government to each municipality within Tokyo, it has been clearly recognized in Tokyo that"long-term provision of in-home care exceeding 6 hours" for the purpose of ensuring parents' employment and sleep is permitted.
We could not ignore the exhaustion of parents of children with medical care needs.
This is a comment from the internal person in charge who promoted the Ustyle Laboratory Medical Care Needs Child Support Project.
Ustyle Care Severe Home Care Business General Manager: Mayumi Kanno
When I was expanding severe home care services in Saitama, I met a mother living in Ageo City who was raising a child with medical needs. I wanted to do something about the situation of this mother, who was exhausted from 24-hour care. There were almost no cases of long-term use of home care not only in Saitama Prefecture but across the country, and the person in charge at Saitama Prefecture at the time also put in a great deal of effort. When we began providing long-term support and she finally told us, 'I was able to sleep for the first time since my child was discharged from the hospital,' I became convinced of the necessity of this support. With this notification from the Tokyo Metropolitan Government, the foundation for expanding the circle of support has been laid. With the 2026 legal revision as a tailwind, we aim for a society where children and individuals with medical needs can receive the necessary support regardless of their area or age.
Project Supervisor: Atsushi Horigami (Severe Home Care Business Block Manager)
When we started in Saitama, it was treated strictly as an 'exception.' Even within our company, which is not bound by conventions or common sense, there were voices saying that nationwide expansion might be difficult. However, that 'common sense' is now beginning to change. The Tokyo Metropolitan Government sincerely addressed the information provided from the nursing care field, responded by saying, 'Naturally, home care should be used for long hours,' and issued a notification ahead of the rest of the country. Our goal is to deliver hope to families who had previously given up, telling them, 'Tomorrow and the future will be okay.' We are still at the starting line, but we want to turn our trial and error into results.
As the nation's largest specialized provider of home care for severe disabilities and intractable diseases, Ustyle Laboratory will continue to strive toward our mission of 'delivering necessary care to everyone who needs it,' regardless of age or area of residence.
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