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Work and Proposals by Spinal Injuries Japan

Makoto Ohama
Vice President, Spinal Injuries Japan

1. Opinion based on overall damage caused by the Great East Japan Earthquake

The impact of the Great East Japan Earthquake on people and things and the chaotic conditions after the disaster were so terrible that it might be said that for people with spinal cord injuries affected by the earthquake, those who did not survive had it easier (head of the Spinal Injuries Japan Iwate branch office). Therefore, it is extremely important to learn lessons from the earthquake for future disaster prevention measures.

2. Work and response by the organization

Spinal Injuries Japan (SIJ) undertook the following activities to provide support for persons affected by the disaster.

  • (1) Solicited support funds from branch office members throughout Japan for one year from April and then distributed the funds to ninety-five members whose houses had been fully or partially destroyed.
  • (2) Transported and distributed bedsore mats and disposable diapers.
  • (3) Acquired gasoline and kerosene from various prefectures, including Hiroshima, Tokyo, and Niigata, and transported it to the disaster area, which was mainly handled by the Yamagata branch office.
  • (4) Working with the Japanese Association of Rehabilitation Medicine and the Japan Medical Society of Spinal Cord Lesions had doctors tour facilities and provide medical treatment.
  • (5) Provided free bathing services to a total of 350 persons affected by the disaster in Rikuzentakata-shi over nine months.
  • After receiving requests from its branch offices in the three prefectures affected by the disaster, SIJ submitted these requests to the Cabinet Office and Ministry of Health, Labour and Welfare in November 2011.

3. Issues that came to light since directly after the disaster

In terms of self-help, it is important to secure around five days (the length of time it takes for aid to arrive) worth of disaster supplies, such as equipment for urinary catheterization and defecation (in particular, disposable Nelaton catheters and indwelling catheters) for persons with spinal cord injuries. It is also important to secure a method so that persons with disabilities can evacuate on their own (cars, etc.).

In terms of mutual help, it is important for persons with spinal injuries to make it easy to receive assistance for evacuating during an emergency by getting neighbors to understand the unique characteristics of their disabilities through interactions during daily life.

As for disability organizations, one issue is developing a system so that if one prefecture sustains substantial damage, a response headquarters can be established in another prefecture in the same block to provide support for persons with severe disabilities.

4. Proposals regarding the future

One proposal made to the central government was that all local governments should be made aware of Saigaiji Youengosha No Hinanshien Gaidorain (Guidelines on Evacuation Support for People Requiring Aid During a Disaster). When doing so, it is important to keep in mind the following points.

  • (1) When local governments create guidelines, persons with disabilities should be convinced to participate in the process, and the guidelines should be effective.
  • (2) A notification system for evacuation warnings, etc., should be created in collaboration with disaster prevention-related departments and welfare-related departments.
  • (3) A concrete evacuation action plan covering issues such as designating who will provide assistance to people requiring aid during a disaster should be created.
  • (4) Information on persons requiring aid during a disaster should be created if people agree to it.
  • (5) Information on persons requiring aid during a disaster should be made use of by sharing it with related organizations during emergencies. An important issue is providing information and supplies since persons with disabilities, particularly those living at home, can become isolated. Therefore, efforts should be made to collaborate on various fronts, such as ascertaining the safety of persons, transporting people to medical facilities and fukushi (welfare) emergency shelters (emergency shelters for vulnerable citizens), and providing relief supplies by establishing emergency partnerships with organizations such as disability organizations and NPOs in advance.

There is growing awareness regarding privacy of personal information, and it is becoming difficult to make use of this type of information during emergencies as there has been little progress in sharing and making use of information on persons requiring aid during a disaster. Measures to remedy this situation must be promptly implemented. If it is necessary to consult with the Personal Information Protection Council as stipulated by ordinance, consultations must be held with and approval received from the Personal Information Protection Council as an emergency response.

From “Guidelines on Evacuation Support for People Requiring Aid During a Disaster”

•Method for sharing information with related organizations

Information such as that on persons requiring aid during a disaster and possessed by welfare related departments and bureaus is shared with related parties, including disaster prevention departments, independent disaster prevention organizations, and local welfare commissioners (Minsei-iin community volunteers), without obtaining the approval of the person in accordance with stipulations in local government's personal information protection ordinances that make it possible to use personal information for other purpose or to provide the information to third parties.

[Reference]
Provisions that make it possible to use information for other purposes or provide information to third parties in personal information protection ordinances

If providing personal information to a person other than the person the information is about is clearly beneficial to the person the information is about.

If there is an appropriate reason for the implementing organization to use the recorded information within the scope necessary to conduct operations it is responsible for or for using that recorded information.

If the Personal Information Protection Council is consulted about providing the information and the council accepts that there is a special reason to do so.

[Reference material]
Act on the Protection of Personal Information Held by Administrative Organs

(Restrictions on the use and provision of information)
Article 8 The head of an Administrative Organ shall not, except as otherwise provided by laws and regulations, use by himself or herself or provide another person with Retained Personal Information for purposes other than the Purpose of Use.

  • (2) Notwithstanding the provision of the preceding paragraph, the head of an Administrative Organ may, in cases where he or she finds it falls under circumstances specified by any of the following items, use by himself or herself or provide another person with Retained Personal Information for purposes other than the Purpose of Use; provided, however, that this shall not apply where it is found that the use by the head himself or herself or provision to another person of the Retained Personal Information for purposes other than the Purpose of Use is likely to cause unjust harm to the rights or interests of the Individual Concerned or a third party.
  • (i) (iii) omitted
  • (iv) In addition to the cases listed in the preceding three items,..., provision of the information to other persons is obviously beneficial to the Individual Concerned, or there are other special grounds for providing the Retained Personal Information

It is also important to make the following improvements regarding life at emergency shelters immediately after the disaster.

  • (1) When distributing supplies, there was an emphasis on fairness, and there were situations when insufficient support was provided to the elderly and person with disabilities who particularly required support. It is indispensable, therefore, that the distribution of supplies be prioritized depending on the degree of the disability.
  • (2) Because there was no privacy at emergency shelters, it was impossible for people to self-catheterize or treat bedsores. Thus, people were exposed to major dangers related to urinary system problems due to a decrease in the frequency of self-catheterization. It is important to ensure privacy by installing screens, etc.

At the same time, the following problems were found at fukushi emergency shelters.

  • (1) There were cases in which equipment for catheterization and defecation ware submerged. As they are indispensable for the daily lives of persons with spinal cord injuries, this caused major problems. In addition, since there was no place to get out of wheelchairs at a general emergency shelter, some people ended up being hospitalized because of bedsores as they were forced to stay in their wheelchair or a car. In order to prevent this situation, an urgent issue is reinforcing fukushi emergency shelters.
  • (2) Fukushi emergency shelters were opened long after the disaster occurred, and persons with disabilities and the elderly were not told of this. Therefore, it is important to ascertain the rough number of people who need to use fukushi emergency shelters, secure enough such emergency shelters to meet that demand, and notify persons with disabilities and the elder of them.
  • (3) In areas such as the coastal areas of Miyagi Prefecture, there were cases when the local government said that it would be troublesome if persons with disabilities went to fukushi emergency shelters on their own. Thus, there is a need for a flexible system to accept people into fukushi emergency shelters.
  • (4) During non-emergency times, there should be collaboration with the managers of facilities used as fukushi emergency shelters. In particular, it is important to secure items such as medical supplies and nursing goods through partnership agreements and to conduct training based on envisioned disasters.

In addition, the following aspects of moving to temporary housing should be improved.

  • (1) There were many situations when so-called barrier-free temporary housing was simply general temporary housing that ramps and grab bars have been installed in. They were not designed with users such as persons with spinal cord injuries who always use wheelchairs since they cannot pull themselves up in mind. Because of this, it is important the central government set standard specifications for barrier-free temporary housing in advance and inform local governments of the specifications.

Finally, there were the following problems during the recovery and reconstruction stage.

  • (1) Many helpers and nurses who are used to handling persons with disabilities are women with young children. In Fukushima, the location of the nuclear accident, there was a serious shortage or workers as many helpers and nurses fled the prefecture. Thus, an urgent issue is how personal assistants and nurses can be secured.
  • (2) If the location of the home of a person with a disability affected by the disaster is designated as being in a danger zone, it is impossible for them to rebuild their house even if it was damaged. In this situation, a family can be forced to live apart from each other if they do not quickly acquire alternate land. There were situations when families were broken up with some members living in care facilities while others lived in temporary housing. It is necessary, therefore, for the central government (Reconstruction Agency) to work with the prefectural government and promptly secure alternative land, giving priority to persons with disabilities affected by the disaster.