Researchers Find Limited Support for Independence in Japan: People With Physical And Mental Disabilities Face Two Distinct Sets Of Obstacles
By Laura Hershey ( LauraHershey@compuserve.com)
When Chikako Kumora was a college student, she needed a job. She answered an ad to work as an assistant to a physically disabled woman, and was hired. She enjoyed the job, and became increasingly intrigued with the independent living movement. Seeing her own employer provide clear directions, while other people with disabilities struggled to make their needs known, Kumora found herself thinking a lot about issues of independence, equality, and respect.
Five years later, still working as a personal assistant, and enrolled as a graduate student in social work at the University of Tokyo, Kumora decided to study these issues in depth. So she conducted interviews with 31 disabled individuals who use personal assistance services. Her research focused on the relationship between the disabled employer and the assistant.
That relationship, Kumora believes, is crucial to increasing independent living options for people with disabilities. "My employer knows what she wants to do, and what she wants me to do," says Kumora. The attitude in institutions, she says, is very different. There, "the workers know what to do, and users don't know what is best."
Disabled persons still in institutions
Unfortunately, that is where the majority of people with severe disabilities live. Only about 2000 significantly disabled people are living independently in Japan, Kumora says. "Most people live with their parents, as long as their parents have the power to care. After the parents have no energy to care, or die, most go to institutions."
Some people with disabilities can get support, training, and advocacy from one of Japan's 97 independent living centers. There are 26 centers in Tokyo. Among the programs they offer is training in how to manage attendant services. Staff counselors work with personal assistance users to determine what they need. The users also have opportunities to practice working with personal assistants until they are ready to do so on their own. In this way, says Kumora, "they gradually learn how to ask, and how to decide."
Lack of funding major obstacle
Lack of funding remains the biggest obstacle, both to getting personal assistance in the first place, and to be able to exercise consumer control. If enough assistants are available, Kumora points out, "people with disabilities can select who they want. [More] assistants are needed; to increase the number, the allowance budget should be more."
The government of Japan is just starting to make more resources available to enable people with disabilities to live independently, outside of institutions. The nation's two largest districts, Tokyo and Osaka, provide funding for personal assistants. In Tokyo, people with the most severe disabilities can get around US$5,000 per month for assistance. A typical part-time job in Tokyo pays $8 to $10 per hour, Kumora points out; and so, for someone who needs round-the-clock attendant services, $5000 is not enough.
The situation is even more difficult for people with mental disabilities, Kumora acknowledges. "Physical disability and mental disability are divided in Japan," she says. The two groups' independent living needs differ somewhat, Kumora adds. Traditionally, people with mental disabilities are seen as needing more expert medical care, while physically disabled people's needs are not as medical. Services for people with mental disabilities are more difficult to provide in the community, and to fund. In addition, while the independent living centers "want to include every disability, in reality most of the users in the centers are physically disabled."
Mentally disabled people have few social resources, less information
Yuka Maruama's research confirms the difficulties encountered by people with mental disabilities in Japan where, says Maruama, there are "few social resources." Psychiatric hospitals are privately funded, while public hospitals are few. "Private hospitals' power is strong," Maruama says. Estimates suggest that 10,000 patients "may be able to go out into the community. But medical power is too strong" to allow independent living for so many people. "Private hospitals hold their patients," Maruama adds.
Another problem is that "people with mental disabilities are not given enough information about social services," says Maruama. Many have spent such a long time living in psychiatric hospitals, without knowing of alternatives or the resources which might support them, that "they lost hope," she says.
New home helpers program
However, the situation could soon change, at least for some of those currently confined. The Japanese government is initiating a program, set to begin next year, to provide home helpers to people with mental disabilities living independently in the community. The service will be modeled on personal assistance services offered to people with physical disabilities, except that instead of physical tasks like feeding and providing transportation, workers will support clients by talking, monitoring daily activities, and assisting with routine reminders and safety checks.
Housing shortage severe
Major obstacles to independent living remain for all disabled people, especially for those with mental disabilities. One of the biggest problems affecting the Japanese in general is the severe housing shortage. "It is difficult to live alone," says Maruama. The financial and support systems available to disabled people do not adequately address housing, she adds. And the private sector offers few opportunities. Says Maruama: "Lenders don't like people with disabilities."
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