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Support for Persons with Visual Impairment Following the Great East Japan Earthquake and Lessons from the Experience
- Support Activities by the National Committee of Welfare for The Blind in Japan -

Toshikazu Kato
Former Secretary General of the Headquarters to Provide Support for Blind People in the Great East Japan Earthquake
National Committee of Welfare for The Blind in Japan

1. Establishing a support system

(1) Why was a response headquarters established in the National Committee of Welfare for The Blind in Japan

Difficult to provide support immediately after the earthquake: We knew that people with visual impairment faced extremely harsh conditions after the Great East Japan Earthquake, which occurred on March 11, 2011. However, it was extremely difficult to find persons with visual impairment, many of whom hid their disabilities, and we were only able to find a small percentage of them, because it was difficult to obtain gas as the tsunami cut off roads in the coastal areas where damage from the earthquake was concentrated, and under these conditions we were able to merely visit the emergency shelters scattered along a more than two-hundred stretch of coast.

Toward establishing a response headquarters: Immediately after the earthquake hit, efforts were made to obtain information and contact people involved with visual impairment rehabilitation, and a response headquarters was established in the National Committee of Welfare for The Blind in Japan (National Committee), and the headquarters launched operations on March 22.

Requests for a list of persons with visual impairment were submitted to nine organizations in Iwate, Miyagi, and Fukushima (these organizations fall into one of three groups - organizations for persons with visual impairment, braille libraries (information centers), and alumni associations of schools for the blind), but as expected, they initially said that it would be difficult to provide the list for various reasons, including the Act on the Protection of Personal Information and constraints imposed by the designated administrator system. However, at the beginning of April, we were able to obtain the list as we negotiated with the prefectures and explained that it was for the National Committee, a venerable organization. In this way, we were able to obtain all the lists because the umbrella organization was the National Committee, which works throughout Japan.

Note: National Committee of Welfare for The Blind in Japan (National Committee) is a comprehensive organization for persons with visual impairment in Japan; Tokujiro Torii established the organization in 1956 by bringing together work in the three fields of self-help activities, facilities services, and education for persons with visual impairment, and it has had numerous successes that form the foundation of current welfare for persons with disabilities.

(2) Providing support in the local area

Calls for supporters: Because providing support locally requires specialized knowledge of and response abilities related to visual impairment, the general rule is that “people who provide support locally are people who provide advice to persons with visual impairment.” Staff were recruited using material such as the mailing list of the Japanese Association of Rehabilitation for the Visually Impaired, and a total of 50 people were found to provide support.

Providing support locally: Working in groups of two, staff provided support while visiting persons with disabilities, mainly those on the coast of Iwate, Miyagi, and Fukushima. First, a list of 586 persons with visual impairment in the coastal areas of Iwate, Miyagi, and Fukushima was created using the names of members of related organizations and users of braille libraries, these people were contacted by phone, and for the 236 who could not be contacted by phone, a person visited them to provide support. Until the latter part of April, the headquarters continued basic activities, which consisted of visiting people at their homes, searching for them in emergency shelters if their home was damaged, and providing support. However, we could not make contact with a relatively larger number of people, many of whom were staying somewhere such as a relative's home and the whereabouts were unclear.

Large number of persons with visual impairment who could not be contacted or provided with support: Unfortunately, the difficult-to-obtain list of organization and facility users amounted to little more than 10% of people with a certificate for persons with physical disabilities, and for the “80% of people” who did not belong to an organization or use facilities such as braille libraries, there was the problem of overcoming the major obstacle that the list of persons with a certificate for persons with disabilities held by the government is considered personal information (this was not true for Iwate). However, we persistently negotiated with various prefectures, the Ministry of Health, Labour and Welfare, and similar organizations regarding whether there was some way to provide support to these “more than 80% of people”, and this resulted in new support activity that started in June.

The number of persons with visual impairment helped by the headquarters is shown in the chart below (as of June 30, 2012.)

Item Total Iwate Miyagi + Sendai-shi Fukushima + Iwaki-shi
Total number of people provided support 3961 904 1811 1246
Support in April 586 201 273 112
Support in May, etc. 51 17 34 -
Sent material in June or after 3324 686 1100+404 389+745
Total number of cases of direct support 1455 352 612 491
Support in April (visits) 236 115 88 33
Support in May (visits) 51 17 34 -
Requests for support in June and after 1168 220 402+88 148+310

For all persons with severe visual impairment in the coastal areas that sustained major damage, a new effort was launched that involved prefectures and municipalities sending National Committee support information. The National Committee did not have direct access to the personal information held by government organizations, but support was provided by having people who read the support material contact the National Committee.

Immediately after Miyagi started to send the material on June 17, there was a flood of phone inquiries, and every day, 20 - 30 requests were received by mail (a return postcard was included with the mailed information) and fax. Iwate sent the material on July 26; Sendai-shi, on September 8; Fukushima, in December; and Iwaki-shi, on February 22.

About 4,000 people probably were contacted in some way.

Furthermore, about 1,455 people requested support from the National Committee and received it (about six times the number of people who initially received support).

2. Large number of hidden persons with visual impairment

(1) Large number of persons with visual impairment develop it midlife

Members of organizations related to persons with visual impairment and users of related facilities account for only little over 10% of the people issued certificates for persons with physical disabilities, and more than 80% of people with visual impairment do not belong to such organizations or use such facilities. The vast major of these hidden persons with visual impairment are persons who developed visual impairment when they were middle-aged or elderly.

Persons without disabilities obtain more than 80% of necessary information through their eyes, and people in their 50s or 60s who have completely relied on their vision but lose their sight are unable to do anything since they have never thought of an alternative way to get information. While there are major differences between individuals, many people are unable to accept that they have lost their sight for anywhere from several years to more than ten years. Therefore, almost all people who develop visual impairment midlife consider suicide. In this way, there are many who are unable to overcome visual impairment developed midlife and feel hopeless.

(2) Condition of persons who develop visual impairment midlife

Many of these people got separated from families and neighborhood acquaintances and barely made it to emergency shelters. There are also many who were unable to admit that they have visual impairment and were completely isolated at the shelter. There were several cases when a support staff found a person with visual impairment at a shelter and asked them how they were doing, the person yelled, “how did you know that I cannot see,” or sighed.

After digging a bit deeper, they would ask numerous questions such as what is a talking clock and what is a video magnifier. The following are from the results of an interview survey of 300 people in Miyagi who requested support in July 2011.

Do not know what talking clocks are: 43%

Do not know or have never used the system that supplies daily-life goods: 56%

These people have a grade 1 or 2 certificate for persons with physical disabilities, and a city official should have been contacted. There is a problem with the method for providing these people with information.

Method for communicating information used for the new efforts in June and after: It is important that the method is based on understanding that the majority of these people have difficulty with obtaining information not only by braille but also even by listening.

People who have not fully come to terms with having visual impairment still understand things as people without visual impairment, who check things visually, do; therefore, they do not remember material that is read to them. Therefore, the first material sent for the new effort in June was a single sheet that recipients had to read and was limited to several lines that would have an impact and be easy to remember, including “Are you struggling? There are talking clocks. Contact us here.” Other material was provided later.

(3) Persons with low vision

A broad range of support is necessary when there is a disaster - for example, persons with a grade 3 - 6 certificate for persons with physical disabilities require their own type of support and there are probably more people who could get a certificate for persons with physical disabilities because of their vision than those who actually get it.

The Guidelines for Evacuation Support for Persons Requiring Assistance During Emergency indicates that persons requiring assistance during emergencies are those with a physical disability (grade 1 or grade 2), and the various areas have created guidelines and manuals that are based on this. However, after the Great East Japan Earthquake hit, many people who fled to safety faced the same conditions as fully-blind people. Excluding people with low vision simply because they fall outside the definition of “persons requiring aid during a disaster” is a major problem.

3. Death of persons with visual impairment due to the disaster

(1) 100 - 110 persons with visual impairment died because of the disaster

Some cities do not have figures for the number of persons with disabilities who died in the disaster broken by the type of disability, and there are still some unclear points, but it is estimated that 100 - 110 persons with visual impairment died. This is about 0.6% of the 18,800 people who died in the disaster, twice the 0.3% of the population that has visual impairment. This is in line with comments that the mortality rate for persons with disabilities is twice that for the general population.

However, it is not right to say that measures are needed for persons with disabilities because their mortality rate is twice that for the general population.

More than 10,000 (55%) of the general population who died in the disaster were 65 or older. On the other hand, according to a fact-finding survey by the Ministry of Health, Labour and Welfare, more than 60% of each group of people with a particular disability are at least 65 years old. Therefore, it can also be analyzed that an extremely large number of elderly died, and many of them had disabilities. In other words, although particular measures for persons with disabilities are, or course, necessary, the number of deaths will not be reduced unless measures targeting elderly persons who develop the disability midlife.

(2) During a six-month period, 4% of persons with visual impairment affected by the disaster died.

For persons with visual impairment, three prefectures and two cities launched a new effort involving sending contact information to all persons with a grade 1 or grade 2 disability on the coast, and requests for support were received from more than 30% of persons with visual impairment affected by the disaster on the coast. People who received support from Miyagi, which launched its efforts the earliest, at the end of June, were contacted again later. It was possible to contact 357 people, but during the six month period from six months to one year after the disaster, 14 of these people died. This is equivalent to an annual mortality rate of 8%, which is abnormally large.

This shows not only that after people barely made it to the shelter with their lives, they lacked access to both doctors and their medicine and were unable to keep in check various acute conditions such as elevated eye pressure but also that although they survived the tsunami, they lost their precious lives due to the poor environment that caused various problems such as a stress from the harsh life as an evacuee.

4. How to prepare support in case of a major disaster

(1) Immediate launch of support organizations and the activities

Although visual impairment, hearing impairment, and inability to move limbs are all disabilities, each has a unique condition. It is necessary that an “appropriate organization” that can provide specialized support for each type of person with disability establish a response headquarters immediately after a disaster and launch activities. Providing prompt support, such as specialized managers and administrative staff and funds, immediately after a disaster will alleviate the harsh conditions for the persons with disabilities at least a bit.

(2) Necessity of preparing to obtain the list of persons with visual impairment

There is a need for a system so that government workers can promptly provide information such as the list of persons with certificates for persons with physical disabilities. In this situation, it is necessary to confirm what takes precedence over the protection of personal information and make preparations so that the list can be quickly put to concrete use.

The various government bodies must make clear decisions regarding various issues related to the list of persons with certificates for persons with physical disabilities, including whether to immediately disclose the list, who should disclose the list, what the simple disclose procedures are, and what type of organizations the list will be disclosed to.

As for support organizations that the list is provided to, the questions are whether an effective manager to handle the disclosed information has been appointed and if a system to properly manage the information, including rules related to the personal information obtained, has been created. At the time of the Great East Japan Earthquake, a director of a disability organization made the inappropriate statement that “we can provide support if you join our organization,” which stoked concerns that the personal information would be used for purposes other than those stated. This was truly regrettable.

(3) Measures and support manual

In response to the Great East Japan Earthquake, three manuals were developed as a commissioned project for the Ministry of Health, Welfare and Labour (inquiries, including those on how to obtain copies, should be directed to the National Committee of Welfare for The Blind in Japan or Japan Federation of the Blind.)

1) Disaster Prevention and Evacuation Manual for Persons with Visual Impairment (created by Japan Federation of the Blind)
(manual for persons with visual impairment themselves and their families)

2) Manual for Support Staff for Persons with Visual Impairment During a Disaster (created by National Committee of Welfare for The Blind in Japan)
(manual for people who provide support to persons with visual impairment)

3) Manual for Support System for Persons with Visual Impairment During a Disaster (created by National Committee of Welfare for The Blind in Japan)
(manual for facilities and organizations related to persons with visual impairment and government workers.)