Don't carry the burden alone! How to connect with a "Coordinator for Children with Medical Care Needs"
My son has PWS (Prader-Willi Syndrome), which is a nationally designated intractable disease.
Prader-Willi syndrome is a congenital, designated intractable disease caused by a genetic abnormality on chromosome 15. It begins with muscle weakness and feeding difficulties in infancy, and from early childhood onwards, it leads to extreme overeating and obesity due to dysfunction of the satiety center, as well as short stature and intellectual disabilities.
Currently, I am receiving support from visiting nurses and developmental support services.
It was a "Coordinator for Children with Medical Care Needs" who helped me connect with those services.
A "Coordinator for Children with Medical Care Needs" is a professional who supports children who require daily medical care, such as ventilators or gastrostomy tubes, and their families. They comprehensively coordinate support across a wide range of fields, including health, medicine, welfare, and education, to support a comprehensive life in the community.
Looking at official information, coordinators do more than just introduce services. They are reliable partners who provide timely professional consultation right after hospital discharge, build a "support team" that connects doctors, local visiting nursing stations, and developmental support facilities, and provide continuous support tailored to the child's growth and life stage.
In my family's case, the "Coordinator for Children with Medical Care Needs" was introduced when we were hospitalized, but it seems that in some cases, they are not introduced.
Because of this, there have been cases where people knew about coordinators for elderly care (such as care managers) but did not know about the "Coordinator for Children with Medical Care Needs" for their own child.
When that happens, you have no choice but to research and reach out for necessary support like developmental support, visiting nurses, and document applications on your own, which makes it harder to connect smoothly.
It is already difficult enough, as medical care and other needs are exhausting both mentally and physically.
That is why I strongly urge families who are about to face medical care needs not to push themselves too hard alone, but to reach out to a coordinator themselves.
Coordinators for children with medical care needs are located all over the country.
So, how can you connect with them? From a user's perspective, I will introduce two main steps.
1. Consult with the "Disability Welfare Window" of your local municipality
The most accessible starting point is the counter at your local government office. If you consult with the department in charge of disability support at the municipal office, they will introduce you to an office where a local coordinator is stationed. For example, in Koto Ward where I live, the "Disability Support Division, Disability Child Support Section" serves as the contact point, and they also distribute a guide book titled "Support Guidebook for Children with Medical Care Needs and Their Families" unique to the ward. First, please try calling your local government office and saying, "I would like to consult with a Coordinator for Children with Medical Care Needs."
2. Use the "Support Center for Children with Medical Care Needs" in your prefecture
If you do not know which municipal office to contact, or if you need more specialized information, the "Support Center for Children with Medical Care Needs" established by each prefecture can be a reliable resource. In the case of Tokyo, there are centers in the ward area (within Tokyo Metropolitan Otsuka Hospital) and the Tama area (within Tokyo Metropolitan Children's Medical Center), which accept consultations by appointment via phone or web form. You can also find information on various consultation counters and systems on portal sites operated by the Tokyo Metropolitan Bureau of Social Welfare and Public Health.
Daily medical care and child-rearing are always accompanied by anxiety and fatigue. Creating a system to "raise children as a team" with the help of professionals is the first step toward protecting the smiles of children and their families.
I hope this information reaches families who are currently struggling and in need of support.