Yoshie Unjo
Representative Director, NPO Solways

Solways was established as an NPO in January 2017 by mothers of children who need constant medical care living in Sapporo City, because there was no child development support or after-school daycare service which could be used by children with severe disabilities or needing constant medical care. In April the same year, we opened a central multifunctional office consisting of child development support and an after-school daycare service in Sapporo. We started with the capacity for a maximum of five children per day and the minimum number of staff permitted under the guidelines for operating an office. Almost all the children using the service were patients of hospitals providing home health care within Sapporo. They lived in neighbourhoods throughout Sapporo, and a year after the service opened, it had already reached capacity.  

In June the following year, we moved our office to a larger venue in the centre of the city, but in order to permit children who need constant medical care living in every neighbourhood of Sapporo to access a service close to where they lived, we decided to open offices in the areas around special needs schools. We opened the Moana multifunctional daycare service for children and adults with severe disabilities in Sapporo’s Kita Ward in August 2019, the Rino Kids daycare service for children with severe disabilities in Sapporo’s Minami Ward in April 2020, and the Rana Kids daycare service for children with severe disabilities in October 2021. Moreover, the Ai Kids daycare service for children with severe disabilities which had been running in the neighbouring city of Ishikari City merged with our NPO in April 2020. The Moana multifunctional daycare service for children and adults with severe disabilities is the only one including “adults”, and is the only multifunctional office in our NPO providing an after-school daycare service and care with daily living. All the others are multifunctional offices with child development support and after-school daycare services, and the capacity of each of our offices is five people. 

Our daycare support service for children with disabilities, which is targeted at children with severe physical and mental disabilities, is staffed by nurses and daycare teachers; we also have an obligation to provide juvenile social workers and specialists carrying out training for various aspects of daily life. It is therefore extremely difficult to secure staff and there are significant hurdles to clear before opening an office; but we could also say that we have a system providing thorough support by professionals. For this reason, we can safely and securely accept children with severe physical and mental disabilities, who are highly individual and need constant medical care. 

Our child development support, which can be used by young children from before a year old until they start school, and after-school daycare service, which can be used by pupils from elementary school until graduation from high school, are both daycare services for children with disabilities as laid down by the Child Welfare Act. Our NPO’s various child development support services are sometimes used by young babies soon after they have moved home from the NICU and their physical condition has stablilised; we also have children who are introduced by medical social workers after they move home from local university hospitals or children’s centres; and recently, we are seeing more cases where children are introduced to us by hospitals or consultation centres in charge of home health care for children in a particular area, and leave hospital and start using our services. For these reasons, our users have ever more severe disabilities each year.

As for the children using our after-school daycare services, even if they did not previously require constant medical care, most of them come to need care such as gastric fistulas or tracheotomies due to the progression of their disability or disease – there are days when all the children using the service have tracheotomies or use ventilators.

Almost all of the children using our services have a high degree of dependence on constant medical care and the severest physical disabilities, and so our nurses have a particularly heavy responsibility. I feel that ensuring that no change in the children’s condition escapes their notice as they provide care without any doctors present requires a high level of skills and experience. However, since we opened in 2017, we have placed great importance on the idea that medical care is one part of the children’s lives, and we must avoid making it central to our activities at the daycare service. For this reason, the daycare teachers and juvenile social workers play a central role in planning therapeutic activities. By providing opportunities to experience the four seasons and culture and to participate in creative and mock activities to children with incredibly few experiences, we support their growth and development. We treat the children’s slightest movements as strengths, and carry out switch and sight line input in order to encourage support for development from experiences of success.  

The specialists providing training for various aspects of daily life not only look at the posture and positioning which make it easiest for each child to display their own strength, evaluate equipment, wheelchairs, and supportive seats, and consider ease of breathing, swallowing, and moving different parts of the body; they also work together with the daycare teachers and juvenile social workers to draw up a therapy activity plan which incorporates elements of rehabilitation into activities.

We aim to provide seamless support across changing life stages, in which the children who used our child development support can start school and transition to the after-school daycare, and the children who used our after-school daycare can use our care with daily living after graduation from senior high school. Our goal is that “however severe a person’s disability, they can live in their local community”. In order to achieve this, we plan to expand our care with daily living services; we are also thinking of opening a short-stay facility, for which there is a particularly great need among the families of children using our services.

In the 2021 revision of remuneration for disability welfare services, the establishment of the basic remuneration used new score criteria and the requirements for calculating the supplement for nursing staff were relaxed, with the intention of expanding support for children who need constant medical care. Due to this, it has become possible to assign more nurses than the staffing quota, and an increasing number of providers have become positive about accepting children who need constant medical care. These children will eventually grow up to become adults. Parents’ initial worry upon finding out that their child has a disability, “How long will my child be able to live?”, turns in no time into the worry, “How long will I be able to care for my child?”. The children’s bodies grow year by year, while their carers conversely age and lose strength. Giving a bath at home to a child who cannot hold up their own head takes a toll on the carer’s body. For children with a tracheotomy or using a ventilator in particular, who require frequent aspiration, how to bathe them safely is one of the problems which home carers confront at a comparatively early stage. For these reasons, all of our NPO’s offices have bathing facilities, with the therapeutic goals of supporting families and helping children to keep their bodies clean. However, while support with bathing is necessary, it is not remunerated under the current system.  

The Act on Children who need Constant Medical Care, which specifies that users should be connected with ongoing support once they are no longer children, enabling them to carry out the activities in their daily lives and in society, came into force in September 2021. However, in the course of operating a service providing care with daily living, I have experienced for myself that the current remunerations for disability welfare services make it difficult to proactively accept people with particularly great needs for constant medical care, such as those on ventilators or with tracheotomies, into such services. Without supplements based on an evaluation of the acceptance of children needing constant medical care, in the same way as for our child development support and after-school daycare services, or independent grants or a system of supplements from the local authority, I believe that the problem of what happens to children needing constant medical care once they grow and graduate from school will remain. 

The people directly affected often have to gather information for themselves in order to find out what support and systems are available to meet their needs, as well as the complicated structures of and application processes for these. The health care professionals and supporters involved with children needing constant medical care feel the same way. If an agency which we can ask in order to get the necessary information, which means a support centre for children needing medical care and an organisation focussed on this, were created in the local community, I hope that everyone would be able to connect for the sake of one child needing constant medical care, providing support from more members of society.

Photo 1 Christmas Party at an after-hours daycare and care with daily living facility. Staff of our home-visit nursing station dressed in cuddly costumes livened up the event.

Photo 2 Autumn harvest festival at Solkids daycare service for children with severe disabilities. The children are not able to go to the vegetable field, but they experienced digging for sweet potatoes.