More and more people with severe disabilities are seeking to take part in social activities while living independently at home. Yet not much progress has been made since the law to promote their independence went into effect in fiscal 2006.
Among such people is Akira Kinoshita, 21, who suffered a neck injury during a judo practice session when he was a high school student. Kinoshita started living in an apartment in Meguro Ward, Tokyo, with his mother in April. Paralyzed from the neck down, he relies on an artificial respirator. But he is studying hard to enter university while receiving nursing care from a home-visit helper as well as his mother.
Originally, he planned to prepare for university entrance examinations at his parents’ home in Kakegawa, Shizuoka Prefecture. However, he gave up the idea because the city was unable to provide sufficient public nursing care.
The family had asked the city whether it could administer 12 hours of nursing care daily, but the municipal authorities would offer only about six hours at most. Additionally, no nursing care facility in the city could offer the needed service.
The only way left for Kinoshita to live independently at home was to move to an urban area with more nursing care facilities that could provide longer hours of care. He decided to move to Tokyo, eventually choosing to live in an apartment house in Meguro Ward because it is close to an organization that supports him.
Before moving to the apartment, he asked the ward government last autumn whether 24-hour home-visit nursing care service would be available. The ward answered it would offer service for only 17 hours a day. Since this was not enough for him to live alone at the apartment, his mother opted to move in with him, to perform such nighttime tasks as managing his respirator and urine checks.
Supported by the Japan Spinal Cord Foundation, Kinoshita has been negotiating with the ward office with the ultimate aim of receiving around-the-clock nursing care at home.
“It will be a heavy burden on people with disabilities if they must spend as much time as I have to receive public services,” Kinoshita said.
Masatoshi Ishida, 40, of Wakayama, lives alone while receiving at-home nursing care. Suffering from congenital cerebral paralysis, he is paralyzed from the neck down and needs daily nursing care.
Last October, the municipal government cut his monthly home-visit nursing care service by 100 hours to 377 hours. After negotiations with the municipal government broke down, Ishida filed a lawsuit in May to demand that his “right to live in a local community” be recognized.
The law to promote independence and social participation of people with disabilities makes it mandatory for municipalities to offer the necessary nursing care to enable such people to live in places of their choosing and lead an independent social life.
There are national standards to classify the degree of need for nursing care. But the actual services that are offered differ by municipality. Because of the huge expense, municipal governments tend to be reluctant to offer nursing care to people with severe disabilities who require home visits and are entitled to three or more hours of services such assistance in bathing, using the toilet and attending outings.
Ninety percent of home-visit nursing care costs are covered by public funds, with half shouldered by the central government and one-fourth each by prefectural and municipal governments. In the case of 24-hour nursing care service, the required public spending alone–including additional charges for attending outings and providing nighttime care–amounts to 18 million yen a year per recipient, with about 4.5 million yen borne by municipalities and about 9 million yen that is supposed to come from state coffers.
But the actual nursing care benefits paid by the central government in the cases of those with the highest degree of Disability amount to only about 3.55 million yen. The figure equates to the amount that can cover only six hours of daily home nursing care for a year. Municipal governments must shoulder the costs that cover the remaining hours of service.
About 7,000 people receive such benefits for people with severe disabilities. According to the Japan Spinal Cord Foundation, only 88 municipalities across the country provide people with disabilities with 20 hours or more of nursing care service per day.
Spinal Injuries Japan and other related organizations proposed to the Health, Labor and Welfare Ministry a system to decide at prefectural level how to bear the necessary costs to deal with around-the-clock nursing care requests.
SIJ Vice President Makoto Ohama said, “Under the current system, those requiring many hours of nursing care can’t live in the place of their choosing.”
Adding to the patient burden is the situation throughout the country in which nursing care simply is not available. Even in Tokyo, where many health care institutions provide such services, one request to dispatch a care helper was turned down by 80 facilities.
Many institutions complained about the low fees paid for nursing care-helper services as set by the Health, Labor and Welfare Ministry. Even the service fee for a person with the highest degree of disability is a daytime average of 1,665 yen per hour, far lower than the 4,020 yen covered by nursing care insurance for home visits to the elderly.
Japan Council on Independent Living Centers President Shoji Nakanishi lamented the current situation.
“The best we can do is to dispatch helpers to the homes of current nursing care service users,” he said. “There has been almost no increase in the number of heavily disabled people who are able to enjoy full social participation.”
Of course, raising fees would lead to increased costs. It would adversely affect not only people with disabilities but also society as a whole, however, if necessary benefits are not provided and disabled people are denied the opportunity to take an active role in society. The government is responsible for appropriating the necessary funds to improve the situation.
Takeharu Yasuda / Yomiuri Shimbun Staff Writer