Families of children needing daily medical care in Japan are struggling to find the support they need, despite a law coming into force last year that was supposed to guarantee them assistance and a standard education.
While many prefectures are preparing to set up support centers by March next year to offer consultation services for such families, some are dragging their feet in providing the necessary help, leaving parents who are facing dire situations feeling abandoned and powerless.
“There are many parents who cannot consult anyone and are feeling trapped,” said Masami Oshiro, 44, a single mother of four in Tomigusuku, Okinawa Prefecture. Her 8-year-old son Reo has cerebral palsy, a brain development disorder.
Oshiro said she felt like she’d been kicked out of the hospital, unprepared and unsure of her situation after Reo’s birth. She had been working six days a week, and it was difficult for her to gather information about what kind of assistance she could receive.
“When I found out my son was in need of medical care, I wanted the city and hospital to show me what support measures I can utilize,” she said.
Now, Reo attends a school for children with additional needs, but his mother had to accompany him for his first two months to ensure a nurse there understood his specific needs, especially regarding his respiratory issues. During that period, her income fell drastically as she was forced to take leave from work.
Reo is among around 20,000 under 20s who need daily medical care in Japan. The estimate by the health ministry doubled over the past 10 years due to progress in medical care that led to the survival of more children born with severe disabilities.
The law that took effect in September last year requires governments, both central and local, to ensure such children can access education in a typical setting with other children, regardless of where they live.
It also requires prefectural governments to set up support centers for families and asks school operators to deploy nurses so the children can attend school without parental escorts.
The support centers are designed to provide a one-stop service with staff with specialized knowledge who can inform parents of necessary measures and contacts, as families often face challenges finding suitable places to inquire about a range of medical and educational issues.
According to a Kyodo News survey conducted in early March, Okinawa is one of eight prefectures preparing support centers or considering whether they are required. Five prefectures were found to have already set up such centers, while 34, including Tokyo, said plans are in place to have them operational by March next year.
“The parents of children needing medical care have many things to worry about. I want (Okinawa) to set up a support center as quickly as possible to alleviate our burden,” Oshiro said.
Many prefectures have set up or plan to open centers in existing facilities such as hospitals. Most will have one centralized location, but Aichi Prefecture plans to open centers in seven locations.
“Children have much to lose due to delays in receiving support. We would like (prefectures) to set up centers first, without delay, and then make improvements when they are in operation,” said Masayuki Kobayashi, the head of a parents association of a group formed by families with children needing medical care and their supporters.
Meanwhile, Gifu Prefecture opened a support center called Mirai in its capital city of Gifu in 2015 for people with severe motor and intellectual disabilities. Mirai now also serves as a support center for children needing medical care.
At three of its branch offices, nurses have been providing consultation services, while the center has been working to develop human resources and promote cooperation among various professions through workshops joined by medical, welfare and government officials.
Goki, the 4-year-old son of Daiki and Yu Watanabe, who lives in the city of Ena, needed to have his trachea cut out and has a device attached to his throat to help him breathe. He needs suctioning once an hour every day.
“We feel relieved just having a point of contact,” said Yu. The family has established connections with other families, medical staff and local government officials by participating in gatherings hosted by Mirai, enabling them to get the information they desperately need.
The center will offer advice to parents before they start communicating with local governments, which serve as contacts for nurseries.
Goki’s parents had wanted to place him in a nursery set up by the Ena city government, but the city responded that they could not secure staff to provide him with the necessary care.
Although the center also had worked to communicate with the city, it took three years until the nursery accepted Goki, and Yu, 38, was temporarily forced to leave her job as a nurse.
Yukari Ichikawa, 60, a nurse who works at Mirai, said, “There are regional differences in responses and some children slip through the cracks.”
Ichikawa called on the state to draw up a comprehensive system involving local governments, saying, “Although some say ‘just leave it to the centers,’ it doesn’t mean that municipalities are free to do nothing.”
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