Ars Vivendi Journal No.4 (March 2013): 18-38

Planned Power Outages and Children and Adults with
Disabilities who require Medical Care: Looking at the
Example of the 2011 Touhoku Earthquake andTsunamiHiroko Satou* (translated by Robert Chapeskie)*Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University, Kyoto, Japan
1. Introduction
The Touhoku earthquake occurred on March 11th, 2011. The area around Tokyo
was shaken by a powerful earthquake (“shindou 5 - strong” on the Japanese earthquake
scale) at 14:46. Trains stopped running, and the streets were filled with confused people
with no way to get home. On the following day, March 12th, TEPCO (Tokyo ElectricPower Company) announced the implementation of “rolling blackout” [1] stoppages in
power provision to the capital area beginning the following Monday, March 14th, in
response to fears of power shortages resulting from damage to nuclear power plants andother facilities caused by the disaster. “Rolling blackouts” were reported as “scheduled
blackouts” in the media, but the specifics of exactly when each area would lose power
were not known until just beforehand, and people with disabilities requiring medicalcare living in the capital area were placed in an extremely precarious position. If theblackouts made it impossible for them to secure a source of electricity for theirmechanical ventilators and suction machines their lives would be in danger. The
circumstances that arose as a result of this disaster and the ensuing planned blackouts
forced many people with disabilities who live at home and rely on electrically-powered
medical devices such as ventilators and suction machines to confront the serious issueof what they should do to protect their lives and maintain their ability to live in theirown homes when a disaster or blackout occurs.
In the end they somehow found ways to get through the three-hour scheduled
blackouts, in some areas no blackouts were implemented, and the summer ended
without any of the large-scale power outages that had been predicted. Compared to18

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the severe conditions faced by disaster victims with disabilities far away in the Touhoku
area, the conditions endured by people with disabilities in the area around the capital
may have become buried as memories of that time fade. For this very reason, however, I
thought it was important to document them.
The most notable effect felt in the capital area as a result of the Touhoku
earthquake was the implementation of scheduled blackouts necessitated by the nuclear
power plan accident which put the lives of people with disabilities who require medicalcare utilizing electrically-powered medical devices in danger. In the capital area many
people with disabilities who require medical care live at home. In this paper I will
document the circumstances people with disabilities who require medical careencountered in the capital area as a result of the Touhoku earthquake, and raise theissue of the government’s grasp of these circumstances not being adequate for theconstruction of effective policy responses to planned blackouts and the confirmation of
the safety of these individuals.
2. Circumstances at the time of the disaster
Interviews were conducted with four mothers of children with severe disabilities
who require medical care with whom the author has been involved living in Nakano
City, Tokyo Metropolitan Area. The participants were interviewed individually in theirhomes or in a cafe. Scheduled Blackouts were ultimately never implemented in Nakano
City, so a group interview of three people with disabilities using mechanical ventilatorsand residing in Saitama Prefecture, an area in which scheduled blackouts were
implemented, was conducted in July in the offices of an independent living center in
Saitama City.
2-1. Helpers and home-visit nurses moved to confirm the patients’ safety and provide
supportOf the four mothers interviewed, three of their children had just arrived home fromschool or a daycare facility. All three ordinarily utilized home care or home nursing
services. When the earthquake occurred, a helper had just arrived at the home of Ms. C
to assist with bathing. Immediately after the earthquake a home-visit nurse and ahelper were at the home of Ms. A, a helper was at the home of Ms. B, and a home-visit
nurse and physical therapist were at the home of Ms. C.

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Ms. A describes being glad that the home-care nurse and helper did not cancel their
appointments as follows:
The home-visit nurse arrived a bit late at just after three (in the afternoon). The
building’s elevator was stopped, so the nurse came up the emergency stairs. The
elevator remained out of service for the next three days. I discussed how to respondto an evacuation with the nurse, and piled injection equipment, three days’ worth of
medication, a thermometer, diapers, medical cards/examination cards, one day’s
worth of regular-use Racol, a suction machine set, and a saturation monitor (adevice that measures oxygen saturation) on a wheelchair so that I would be able toget away quickly. If I had been by myself I think I would have panicked and had no
idea what to do. The home-visit nurse left to check on all of his other patients. The
second aftershock occurred, and the helper arrived a bit early at five thirty in theevening. She came thinking our family might be in danger. I couldn’t reach myhusband, so the helper stayed. I had her spend the night. The streets outside weredensely packed with people and cars. My child’s symptoms grew severe, and thehelper responded by administering a suppository. My husband arrived home atthree in the morning after having walked from Chiba.
Ms. B also relates how a helper came and assisted her:
The home-visit helper arrived at just past three (in the afternoon). My child uses
concentrated oxygen (electrically powered, fixed-type) at home and carries two
oxygen canisters (one small and one large with a total capacity of 0.5L; enoughfor12 hours) when he goes out.

Because the helper had come, when theaftershocks occurred we were able to exit from the second floor carrying thecanisters and come back inside [when the shaking had stopped]. In order to beready to evacuate at any time we put together a large pack containing three or fourdays’ worth of medical supplies, medication, oxygen canisters, diapers, etc. Even
with my husband we would need my mother’s help [to carry everything] and I was
so worried about who would carry my child if we had to get away that I hardly slept
at night.
Saying that he would check on his other patients, the home-visit nurse who had come to
Ms. A’s house then left and went to the home of Ms. C. Ms. C describes her experience asfollows:
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The home-visit nurse was not scheduled to visit on March 11th, but he came
anyway. He had actually come to the nearby home of Ms. A, but he stopped by tomake sure that my child was OK before going home. I was very glad he came.
There were home-visit nurses who took it upon themselves to go and check on the safetyof the people to whom they normally provided care. In some cases the home-visit nurses
and helpers moved immediately to provide support and check on the safety of those theynormally visited when the disaster occurred. The fact that home-visit nurses andhelpers come to their homes gave these mothers a strong sense of security. While thisearthquake happened to occur at exactly the time these care providers normally visit,
helpers and home-visit nurses played an important role in confirming safety andproviding support when the natural disaster struck. A response that goes beyond
normal working hours, like that of the helper who spent the night in the home of Ms. A,
is required when a natural disaster occurs. However, as is described in the following
section, this kind of response on the part of helpers during a disaster is not
acknowledged as part of their job. When a disaster occurs, the fastest confirmation ofsafety and provision of support to people with severe disabilities is provided by thehelpers and home-visit nurses who normally assist them. There is a need to reform thecurrent system so that helpers and home-visit nurses can perform this confirmation ofsafety and provision of care during a disaster as part of their formal duties.
2-2. A system to dispatch helpers and other personnel capable of responding when adisaster occurs is needed
Mr. H, a person with a severe disability who runs a helper agency in Nakano City,
said the following about the activities of helpers after the March 11th earthquake:
Helpers/full-time workers/part-time workers at the helper agency each did theirpart, going by bicycle to confirm the safety [of those receiving the agency’s services].
It was very difficult; furniture had fallen over in the homes of care recipientsmaking it impossible for them to enter in their wheelchairs, and plans had to bemade to have them sleep crowded together in the office or at the home of a friend. In
addition, as a result of the planned blackouts, the dispatching of staff for thispurpose had to be arranged without knowing how long it would take helpers wholive far away to arrive and return home. We also, of course, had to do our normal
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work. We could not allow holes to appear in our operations. (Sora tobu kurumaisu
toraberusaron 2011 [Wheelchair flying in the sky travel salon 2011])
Confirming safety in the event of a disaster has not been designated as the job of
helpers and home-visit nurses. As in the above examples, however, there were cases inwhich they immediately moved to confirm the safety of those to whom they provided
care independently. The helper who spent the night at the home of Ms. A did so of her
own volition to alleviate Ms. A’s anxiety. There has been no systematic determination,
however, of how to manage the working time of helpers during an emergency. When an
emergency such as a natural disaster occurs and helpers are placed in a situation inwhich they have no choice but to continue to provide care, the issue of what to do about
these extended hours and their cost has yet to be resolved. Moreover, nursing carebenefits cannot be obtained for time spent going to the homes of care recipients toconfirm their safety.
When this earthquake occurred, the Ministry of Health, Labour and Welfare
released notification [2] of a flexible response concerning caregiver hours at thediscretion of local authorities. There were cases, however, in which problems arosewhen helpers fled the disaster areas with those receiving care and the local authorities
did not accept care time being exceeded. [3] It is necessary for the national government
to not only request a flexible response on the part of local authorities but also to put inplace a system to manage the dispatching of helpers and other caregivers in the case ofa disaster, including taking budgetary measures and providing needed caregiver hours
during special circumstances such as an evacuation and providing nursing care benefits
to cover the work of confirming safety when a disaster occurs.
3. The response of people with disabilities who require medical care to planned
blackouts
Facing a power shortage caused by nuclear power plants being shut down after theearthquake, on March 12th, the day after the disaster, TEPCO announced that it would
be dividing the region into blocks and implementing planned blackouts in each block inturn according to a fixed schedule (rolling blackouts). The duration of each blackout was
to be three hours. The blackout areas kept changing right up until the outages started,
however, and the resultant blackouts could hardly be described as “planned.” People
with disabilities who require medical care using devices that need electricity living in
the areas designated to undergo blackouts were in a state of extreme anxiety. What22

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follows is a record of the circumstances at that time according to the statements of those
directly involved.
3-1. ALS patients [4]These patients are attached to a mechanical ventilator twenty-four hours a day, so
for them a power outage is life-threatening. Immediately after scheduled blackouts
were announced, the author visited the homes of ALS patients in Nakano City where
she lives.
*ALS patient K
His ventilator had a battery that seemed capable of lasting for eight hours. His suction
machine, however, used a plug, and his backup suction machine was old so he didn’tknow if the battery would work or not. His family called TEPCO’s customer center andrequested the loan of a generator. It seems that they did this because TEPCO’s website
said they would respond to requests for loan generators. TEPCO’s response, however,
was that they could not provide a generator and that patient K’s family should contact
their local authorities. Mr. K’s family then telephoned Nakano City, but it seems thatthey too were not responding to requests for things like loan of generators.
*ALS patient L
When I visited the home of Ms. L on March 14th, the public health nurse had just cometo see her. The helper was also there, and everyone was thinking about what theyshould do when the planned blackout occurred. The mechanical ventilator’s battery
would last for eight hours, but their problem was that they did not know whether or not
the suction machine would last three hours. So together they thought up and tested
other methods to use if the suction machine’s battery failed, such as using tools likesyringes to suck out phlegm.
*ALS patient M
Many batteries had been prepared in advance at Mr. M’s house, and the ventilator andthe suction machine would both have power even if a blackout lasted eight hours. There
was a shortage of helpers, however, and for some periods of time the only caregiver was
Mr. M’s wife. If an earthquake happened during one of these periods, it would be
impossible for them to flee, so his wife said that if the house came down, it would be theend of them.
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2-2. People with disabilities who require medical care
In their interviews the mothers of children with disabilities who require medicalcare living at home in Nakano City introduced in section 2.1 responded as follows
regarding the response to scheduled blackouts:*Ms. B
Five days after [the earthquake], I went to the hospital where my child normallyreceives care and asked what I should do about oxygen. The doctor at the hospitalsuggested I find a family doctor in my neighborhood. The doctor wasn’t sure about
hospitalization, but oxygen could be loaned out. The hospital was located in ascheduled blackout area, however, so I was told that in the event of a blackout thesituation would be the same. It was suggested that I consult the medical association
after confirming whether or not the local authorities could respond to my needs.
After consulting with the medical association I was referred to Dr. O, so I visited
this physician. It was decided that my child would see the doctor once a month. I
was told that Dr. O would talk to other doctors and have a local physician procure
oxygen, but I don’t know what happened after this. When the city checked on me,
I did not have batteries but had been able to obtain a battery-powered nebulizer.
Regarding suction and inhalation my child would be fine if there were a three hour
blackout. My worry was oxygen. I had five large and five small spare oxygen
canisters in my home, but they would be empty in a week. I had someone come andexchange them every week, but if the blackout occurred just before they were empty
it would be a problem. There were also cases in which the oxygen provider did nothave oxygen. I was worried about what to do during the night. My child’s bodytemperature regulation is not good, so she sweats easily. There was a danger ofdehydration because she normally uses an air conditioner and humidifier
twenty-four hours a day.
*Ms. CI wondered what to do about my child’s ventilator and suction machine. I didn’tknow what would happen if there were a scheduled blackout. If there were only
blackouts between certain times I would find a way to endure them. But what was I
to do if the blackouts happened without advance warning? With this kind ofproblem in mind I had contacted TEPCO twice before the earthquake occurred to
ask for a generator, but both times I had been told to prepare one myself.
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Generators cost ¥200,000 so I couldn’t just go out and buy one, and even if I had
had the money I didn’t know what kind would be good, so when the earthquake
happened I hadn’t been able to procure a power source. Fortunately, my father wasable to make a battery device capable of lasting two to three hours. I didn’t actually
use it but having it gave me piece of mind. If something happened I would have no
choice but to flee to the hospital, so I thought I had better have a ventilator andseveral days worth of suction equipment in my home. At the time I had two or threebatteries for my suction machine, each of which could be used for about a day, so I
could have used it for two days without power. I wasn’t terribly worried because I
thought I could bring my child to the hospital on foot. My child only used theventilator at night, but since it had no internal battery I was a bit concerned.
*Ms. DMy child was being hospitalized at the time of earthquake, and an announcement
was broadcast saying that there would likely be scheduled blackouts but there wasno need to worry because the hospital had its own generators. I was relieved to be
told that while patients from Fukushima were being accepted and my child was notable to continue hospitalization, if worst came to worst we can come to the hospital.
Regarding suction machines (used once per hour), I had one plug-in and fourbattery-powered devices. I also had a manual suction device. My child uses oxygenat night for approximately eight hours while sleeping. On the day after theearthquake I received phone calls from both my child’s school and oxygen provider.
There were no problems with the inhalation machine because it wasbattery-powered. My child would be fine if there were planned blackouts lasting
three hours.
3-3. People with disabilities who use mechanical ventilators and live in areas in whichplanned blackouts were implemented
A group interview of three people with disabilities who use mechanical ventilators
was conducted on July 7th at an independent living center in Saitama City. They
described their circumstances during the scheduled blackouts as follows:*Ms. E (Resident of Saitama City)
When the earthquake occurred, I was in my home on the first floor of an apartmentbuilding. Together with my helper I fled to an evacuation point located in the25

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parking lot of a factory, but it was impossible to find a power source for myventilator there so I went to the office of an independent living center to secureaccess to electricity. I experienced planned blackouts five times beginning March
20th. Every day the timing was different, and the blackouts lasted about threehours. They were unplanned blackouts in the sense that you didn’t know what timethey were going to occur until the night before. My ventilator’s internal battery
lasts for eight hours, and it takes about four hours to charge. This time theblackouts were only three hours long, so there was no problem, but if there were
blackouts that lasted longer than eight hours I think I would have to be transported
by ambulance to the hospital I am to go to in an emergency.

After thisearthquake this hospital received patients from Ishinomaki City, however, andsince during a disaster power will be used for severely injured patients, I might not
be able to receive treatment. In this sort of situation I want the government to dosomething. As a ventilator user, I received a telephone call from the city, but I was
not asked any questions about securing a source of power. I asked them if there
were emergency power supplies but I was told there weren’t any.
*Mr. F (Resident of Kawaguchi City)
I am an employee of an independent living center, and on the day of the earthquake
I was doing work as usual. I fled outside after the second tremor. I normally plug
my ventilator into a wall socket in the office, so I could not take it with me. I exited
to a nearby parking lot and was able to secure power for my ventilator through a
car’s cigarette lighter, so I spent the next hour drawing power from the car while
waiting to see what would happen as the aftershocks continued. The planned
blackouts came as close as fifteen meters to my house.
*Ms. G (Resident of Kawaguchi City)
Kawaguchi City experienced planned blackouts, but by chance the area in which
both my and Mr. F’s homes are located was exempted. My ventilator’s internal
battery only lasts for thirty minutes. The external battery I bought with my own
money lasts ten hours. In preparation for the planned blackouts some of my family
members drove to my house and stayed overnight, and it was then possible to get
power from their car. As long as there is gasoline electricity can be taken from arunning car. My ventilator would be fine if there were planned blackouts lasting
three hours. The situation concerning my suction machine, however, was worrying.
I was also worried about how to secure power if the blackouts continued to occur.
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TEPCO announced on its website that it would be lending out generators, but they
were only thinking about lending generators to hospitals and other institutions andhad not thought about lending them to individuals in their homes. Someplace
nearby that will lend generators to people using mechanical ventilators when ablackout occurs is needed.
From the above interviews, it is clear that these individuals worried about not having asuction machine. There is a need for local government support measures such as
preparing locations close to users’ homes where they can borrow generators or external
batteries and making it possible for individuals to obtain reserve batteries.
4. Local authorities’ response to prepare for blackouts
4-1. Local authorities’ response to prepare for planned blackouts
On March 13th, a notification entitled “regarding the informing of public healthcenters concerning alerting people receiving care in their homes using devices such asmechanical ventilators about rolling blackouts implemented by TEPCO” was sent tolocal authorities by the Ministry of Health, Labour and Welfare. The author requested
that Nakano City send public health nurses to the homes of people using medical
devices before the planned blackouts began to determine whether or not they wereprepared for power outages. Nakano City received the notification from the Ministry of
Health, Labour and Welfare and confirmed the state of use of medical devices andresponse in the case of a blackout through visits and telephone calls between the 14thand 18th of March. For children under eighteen years of age this survey was carried out
by the city’s child and child-rearing department child and child-rearing support center,for people over the age of eighteen with an intractable disease patient it was carried out
by the health and welfare department health and welfare support center, and for people
over the age of eighteen with a disability it was carried out by the health and welfare
department disability welfare section. The results of this investigation were that amongchildren under eighteen years of age, apart from three cases in which reserve suction
machines had not been prepared, all of the individuals in question seemed to be incircumstances in which they could handle three hour blackouts. In the cases in which
reserve suction machines had not been prepared, it was not the case that measures toaddress the situation were being taken; the family was simply told to obtain reserve
devices themselves. And since the family of Ms. D, whose child was being hospitalized,
was not contacted by the city, it seems that not all families were contacted. This27

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undertaking did, however, lead to Nakano City having a better understanding of thecircumstances of people living at home who require medical care.
Nakano City also mailed a notice “regarding the response to shortages of power
provided by TEPCO” to people using medical devices in their homes, urging them toprepare for blackouts by readying reserve devices and backup power sources on theirown, consult with their local authorities and home visit nurses, always keep their
medical device batteries charged, make sure a resuscitation bag is ready to be used at
any time, and prepare rechargeable, foot-operated and hand-operated suction machines
in addition to an installed device. The notification from the Ministry of Health, Labourand Welfare was an alert concerning planned blackouts, and was not a document urging
local authorities to implement measures in response. Local authorities thus did notprepare a response for when blackouts occurred. As will be described in section 2 below,
however, there are limits to how people can respond on their own as individuals. Thereis a need for assistance measures to be implemented by local authorities.
Using a supplementary budget adopted in June of 2011 for measures to deal withthe disaster, based on the results of this survey Nakano City installed manual suction
machines and manual respiration assistance devices at a daycare facility attended bychildren with disabilities who require medical care and two care centers utilized byadults with disabilities who require medical care to be used when power outages occur.
[5] This can be viewed as a result of the survey of preparedness for scheduled blackouts.
Policies cannot be created without an understanding of the facts on the ground. It istherefore important for local authorities to develop this kind of understanding.
4-2. Batteries and generators are needed when blackouts occur
When a blackout occurs, what is important for people with disabilities who require
medical care is securing a source of power for their medical devices. Securing powersources was identified as a major problem in the interviews conducted with members of
the independent living center in Saitama City, an area in which blackouts actuallyoccurred. Members of the independent living center requested measures to supply themwith power from the city’s disaster response division (they had been told they could not
be provided by the disability welfare division), and subsequently emergency generators
were set up in a community center in the City’s Chuo Ward. However, since generators
produce higher voltages than the 100V sockets mechanical ventilators are connected toin users’ homes, there were concerns that ventilators could break down if connected to a
generator. None of the members had ever used a generator. They did not know whether
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or not they would actually be able to use one to power their devices.
It seems that Ms. E telephoned her ventilator’s manufacturer to see if they would
loan out batteries from their stock. Their response was that they would not. Eachbattery apparently costs ¥40,000 and only lasts for ten hours. “There is no government
assistance, so [batteries] are too expensive for people to buy for themselves and people
who don’t have a lot of money can only use plug-in power, ” said Ms. E. Her ventilator isleased but there is no government support for external batteries, which must be paid for
entirely by the user, and including replacements this has reportedly cost her a total of¥400,000 so far. Why is there no government support for the purchase of batteries, anecessary piece of equipment? Ms. E speculated that “it was originally assumed thatpeople using ventilators would not go outside. It was assumed that they would stay intheir homes connected to ventilators designed to be plugged into a wall socket.” Mr. F
said, “going out connected to an external battery is a luxury, so assistance is notprovided.” Ms. E said, “even a person with a disability who cannot go out and spends allof their time at home in bed needs an external battery when this kind of disaster occurs,so the government should assist in procuring external batteries.” I agree with her
assertion.
After the disaster, Ms. A, the mother of a child with a disability, looked for a reserve
battery on the Internet, but affordable batteries were sold out and she was thus unable
to obtain one.

She wishes there had been information on where batteries andgenerators could be found and a system that provided assistance in purchasing reserve
batteries to allow people who use medical devices at home to prepare for blackouts. Ms.
A later purchased an uninterruptible power device to secure a source of power for her
child’s medical devices.
During a blackout wall-socket power cannot be used, so a battery or generator isneeded. Generators like those kept in disaster management warehouses, however,cannot be used in densely populated residential districts or apartment buildings inurban areas. Their noise and smell cause problems for neighbors, and they worsen thecondition of the people using them. As is done in Saitama City, it is better to set up
generators at public facilities and provide power to evacuees who require electricity for
medical or other devices. The best solution is for the government to assist individuals in
procuring a stockpile of batteries. As was expressed in the group interview, whilebatteries are essential items they are too expensive for individuals to buy on their own
and no assistance is provided by the government. The government must enact policies,
such as funds to allow each individual to purchase at least one spare battery andbattery installation assistance for every person with a disability who requires medical
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care, to make sure that everyone who needs reserve batteries can obtain them.
In June Tokyo Metropolis conducted a survey concerning the blackout preparationsof people who use mechanical ventilators in their homes. After receiving the results [6],on July 15th the government implemented an “emergency assistance for people
receiving treatment at home” support system to provide assistance for things such asexternal batteries. The purpose of this system was to prepare for circumstances such aslarge scale blackouts and ensure the safety of people using mechanical ventilators intheir homes. Its target was medical institutions providing mechanical ventilation
treatment to patients receiving medical care in their homes. These institutions were
notified about this system directly, but the Nakano City welfare office did not hear
about it. Because measures to support people with disabilities requiring medical careare carried out with a focus on medical institutions, it is difficult for local authority
welfare offices to obtain a clear understanding of the state of affairs concerning these
individuals.
5. The issue of a system to confirm safety
5-1. An adequate understanding of the circumstances of people with disabilities who
require medical care has not been obtained
At the time of the Great Hanshin earthquake, too, and during the Touhoku
earthquake, a barrier encountered when rescuing people with disabilities in the affected
region was the problem of not knowing where they where and not being able to obtain
any information from the government. Aid for people with disabilities who require
medical care living at home was urgently required but without knowing their location
the state of affairs was such that even distribution of aid such as medical supplies could
not be carried out. I think the government’s lack of understanding of the circumstancesof people with disabilities who require medical care may well have impeded both theconfirmation of their safety and the provision of support not only in the Touhoku area
directly affected by the disaster but in the area around the capital as well.
In “Concerning comprehensive support for people with severe disabilities - Resultsof a survey conducted in Kyoto City, Fukoka City, Nakano City, and Morioka City”(Sato 2009), the author found that, according to the results of a survey conducted in fourmunicipalities, the number of people receiving medical care was not known in Kyoto
City, Fukuoka City, and Morioka City.
In Nakano City each department was surveyed (children under eighteen, adults
over eighteen, and people with intractable disease patient are handled by the child and30

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child-rearing division, the disability welfare section and health and welfare center
respectively), and the results showed a total of seventy severely disabled people, amongwhom thirty-nine required medical care (six in institutions). Considering the fact thatin Nakano City the majority of people receiving medical care live at home, confirming
their safety when a disaster occurs is extremely important.
For people with disabilities who require medical care, evacuation is impossible ifthey have only one family member because there is too much to carry. They also face alife-threatening situation if there is a power outage. For these reasons it is necessary forthe government to ensure it has a sufficient understanding of the circumstances ofpeople with disabilities who require medical care and establish a system that can
rapidly confirm the safety of these individuals when a disaster occurs.
5-2. A system for registering people who require assistance in the event of a disaster
After the Great Hanshin earthquake in 1995, confirming the safety of people who
require assistance, such as elderly people and people with disabilities, was a major
problem, and the number of local authorities creating systems to register people whoneed assistance in the case of a disaster increased. According to the “survey of the stateof measures to address people who require assistance in the case of a disaster”
conducted by AJU Independence House [7] in fiscal 2008 targeting the four prefecturesin the Tokai area (Aichi, Gifu, Mie, and Shizuoka), over 90% of local authorities hadcompleted, were in the process of creating, or were planning to create a list of people
who require assistance for a system of registering people who need assistance in thecase of a disaster. We will have to wait for future studies to determine whether or not
systems to register people who require assistance in the case of a disaster functioned
after the Touhoku earthquake, but such systems existed in areas affected by thisdisaster such as Kamaishi City, Ishinomaki City and Iwaki City.
In Nakano City, too, there is a “Nakano City system for the registration of people
who desire assistance in the event of an extraordinary disaster.” A pilot program for thissystem was initiated in 1989, before the Great Hanshin earthquake, and the systembegan functioning in earnest in 1992. The system covers people over the age of sixty-five,people with disabilities, and people with recognized intractable disease patient who
would have difficulty evacuating by themselves. These individuals submit their address,
name, date of birth, contact information, and physical condition to the city. The list ofregistered names is distributed to local voluntary organization for disaster prevention,
local city centers, and police and fire departments, and these organs are supposed to act
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to confirm the safety of the individuals in question and provide assistance in the eventof a disaster. The meaning of this system is to confirm the safety of people withdisabilities and provide assistance in the event of a disaster. However, this Nakano City
system, which was established quite early from a national perspective, did not function
after the 2011 earthquake.
5-3. Systems for registering people who require assistance in the event of a disaster that
did not function
I asked the four mothers of children with disabilities mentioned above whether or
not their safety had been confirmed.
*Ms. AI received a telephone call from a welfare commissioner on March 14th, and was
visited by a welfare commissioner and two child welfare commissioners on March
30th. Although I had registered with the city’s system for the registration of people
who desire assistance in the event of an extraordinary disaster, the city did not passon my information to the head of the local voluntary organization for disasterprevention.
*Ms. B
Although I had registered with the city’s system for the registration of people who
desire assistance in the event of an extraordinary disaster, I did not even receive asingle telephone call. No one visited me and I wondered if there was any point inhaving registered.
*Ms. CI received a telephone call from a welfare commissioner around the middle of April.
I have not yet been contacted by the local voluntary organization for disasterprevention.
I had registered with the system for the registration of people who desire
assistance in the event of an extraordinary disaster but nothing came of it. I had
registered with the disaster management department, so I contacted them at the
beginning of April to ask about what was being done. It was told to me that theperson in the disaster management department asked the local voluntaryorganization for disaster prevention for visit to registrants.
32

Ars Vivendi Journal No.4 (March 2013): 18-38*Ms. D
Nobody from the local voluntary organization for disaster prevention came. I have
put up a registered person who requires assistance sticker, and I hope someone will
check on me after things have calmed down a bit.
As these statements make clear, none of the people interviewed were checked on by the
local voluntary organization for disaster prevention through this registration system.
While a system for the registration of people who desire assistance in the event of an
extraordinary disaster had been put in place, it did not function after this disaster.
When I asked the person in charge of the Nakano City disaster management section inJune why the system had not functioned, I was told it was because it had not been
determined how severe an earthquake had to be to trigger the confirmation of the safetyof those who had registered. In a response to this disaster, it seems it has now been
decided that in future the local voluntary organization for disaster prevention will takeaction to confirm the safety of registrants in the event of a “shindo level 5 - strong” orhigher earthquake. For reasons related to the protection of personal information,
however, the list of names of those requiring assistance has only been given to the headof the local voluntary organization for disaster prevention. The head of the local
voluntary organization for disaster prevention and many of the members of the local
voluntary organization for disaster prevention and neighborhood association are ofadvanced age. In practice, it is not possible for the elderly head of the local voluntaryorganization for disaster prevention to go around and confirm the safety of thoserequiring assistance. To whom the head of the local voluntary organization for disasterprevention gives the list of names and how the confirmation of safety is to be carried out
has been left up to the local voluntary organization for disaster prevention, and thisprocess remains unclear. An employee of the city has said that expressions of doubt
about whether the local voluntary organization for disaster prevention can provide
assistance to those who require it have been received from members of the local
voluntary organization for disaster prevention. There is uncertainty about whether thesystem for the registration of people who desire assistance in the event of an
extraordinary disaster is really a system capable of functioning when needed.
The local voluntary organization for disaster prevention did not visit to confirm
safety, but some welfare commissioners did conduct safety checks via telephone andhome visits. The welfare commissioners’ responses differed widely; one telephoned after33

Ars Vivendi Journal No.4 (March 2013): 18-38

three days, one visited after one month had passed, and some did not make contact atall. This was because checking on the safety of people with disabilities after a disaster is
not designated as part of a welfare commissioner’s duties, and while an elderly person
living alone had a list of names of people with disabilities, this list was not possessed bywelfare commissioners.

People who made contact and welfare commissioners who

visited people’s homes can be seen as having contacted the homes of people withdisabilities known to them on their own initiative.
After the 2004 Chuetsu earthquake, Kashiwazaki City in Niigata Prefecture
registered people who require assistance using a system in which the names of two
people requiring assistance were registered to one local care provider, and when the2007 Chuetsu offshore earthquake occurred this system allowed the confirmation ofsafety and provision of guidance in the Kitajo district of Kashiwazaki City to gosmoothly. In Kanagawa Prefecture’s Chigasaki City, confirmation of the safety of people
who require assistance was conducted after the Touhoku earthquake, and it appears
that 76.2% of those registered were checked on. It seems that Chigasaki City was able
to conduct safety confirmation after this disaster because a system of safety
confirmation by local comprehensive support centers in addition to welfarecommissioners and local voluntary organization for disaster prevention had been put inplace. I think the creation of systems for confirming the safety of people who requireassistance through this kind of multi-layered network is needed. It is also necessary to
examine how local authorities’ systems for registering people who require assistance inthe event of a disaster operated after this earthquake and consider policies to improvethem.
In order to provide local mutual assistance, not only when disasters occur but on aregular, everyday basis, in 2011 Nakano City began creating a local mutual assistancenetwork. On the basis of newly established “regulations concerning the promotion of
local mutual assistance activities,” a list was compiled of people over the age of seventy
living alone, households of residents over seventy-five years of age, and people withdisabilities who wanted to be registered, and this list was then given to the desiredneighborhood association to facilitate regular checks on the registrants. Whether or not
it will function effectively is a question to be addressed later on. Another issue to beaddressed is the relationship between this system and the Nakano City system for theregistration of people who desire assistance in the event of an extraordinary disaster. I
require this local mutual assistance system designed to check up on registrants on aregular basis and not only when there is a disaster to function effectively as part of a34

Ars Vivendi Journal No.4 (March 2013): 18-38

multi-layered network serving the needs of people with disabilities who require medicalcare.
6. Discussion
According to interviews conducted with people with disabilities who require
medical care and their parents living in Nakano City, Saitama City, and Kawaguchi
City in the Tokyo area, it became clear that what is particularly important to these
individuals is confirmation of safety and measures to address planned blackouts.
However, as was seen in the case of Nakano City, even though the local authorities had
implemented a system for the registration of people who desire assistance in the eventof an extraordinary disaster in order to confirm the safety of these individuals, thissystem did not function after the March 11th earthquake. And the response ofgovernments, including the national government, to the planned blackouts wasinadequate.
Why was the situation on the ground not better understood by the local authorities?
I think the reason lies in the insufficient cooperation within administrative
organizations and between governments and medical institutions and welfare facilities.
Within the Nakano City administration, responsibility for people with disabilities who
require medical care is spread among multiple sections. To begin with, responsibility is
divided among the child and family support center, which is in charge of children, thehealth and welfare center, which supports people with intractable diseases, and thedisability welfare section, which provides assistance to people with disabilities.
Regarding alerts and encouraging preparations for the planned blackouts following therecent disaster, each of these three sections worked with the people under its
jurisdiction separately. Since there was no one section covering all of these cases
together, in order to find out what sorts of results were obtained it was necessary tocontact each of the three sections separately. It is a problem that there is no section
covering all responses regarding people with disabilities who require medical care andthat information is not shared between the three sections involved.
In addition, government services are fundamentally provided on the basis ofapplication, and as a result while the government has information on those who haveapplied for welfare service or disability identification booklet, it does not have sufficientknowledge of those who have not applied for these documents. People with disabilities
who require medical care are always receiving treatment and are thus always connected
to a medical institution. It cannot be said, however, that there is sufficient cooperation
35

Ars Vivendi Journal No.4 (March 2013): 18-38

between the government and medical institutions. The current state of affairs seems to
be one in which the government takes the view that responding to the needs of those
who require medical care is the responsibility of medical institutions, while medical
institutions take the view that only specialist institutions should treat these individuals.
In order to support people with disabilities who require medical care, cooperation
between medical institutions in charge of providing medical treatment andgovernments that provide welfare and public health services is needed.
This interview survey of people with disabilities who require medical care living in
the capital area following the 2011 Touhoku earthquake has demonstrated that a clear
understanding of the circumstances of people with disabilities who require medical careis needed in order to create policies addressing the confirmation of safety and planned
blackouts. To this end, the construction of a collaborative system involving both the
medical and welfare fields is essential.
(Revision of a paper originally published in “Core Ethics” 8)

Notes[1] TEPCO used the term “rolling blackouts (rinbanteiden),” but as “planned blackouts(keikakuteiden)” was reported in the media and widely adopted this term will be used inthis paper.
[2] “Concerning the response to the needs of people with disabilities who require careaffected by the March 11th earthquake off the pacific coast of the Touhoku area”
notification issued by the Ministry of Health, Labour and Welfare on March 11th, 2011[3] When a woman with a severe disability in City T asked for public funds to cover new
costs related to her care as an evacuee her request was rejected by the city. After theearthquake the national government issued a notice calling for a flexible response
regarding people with disabilities, and other local authorities accepted similar requests
for support. The woman has asked the prefecture to investigate.
[4] Amyotrophic Lateral Sclerosis (ALS) is an intractable disease (“nanbyo”) in which
the muscles progressively weaken until no strength remains. It becomes difficult for the
body to breathe on its own, and patients then undergo a tracheotomy and live attached
to a mechanical ventilator.
[5]

The

daycarefacility

wasequippedwithmanualsuctionmachines,

electrically-powered inhalers, and manual respiration assistance devices. The carecenters were equipped with manual suction machines (pedal type), electrically-powered36

Ars Vivendi Journal No.4 (March 2013): 18-38

suctionmachines(rechargeabletype),

inhalers(rechargeabletype),

artificial

resuscitator (manual type).
[6] Results such as that 36.9% did not have external batteries, 11.1% had generators,
and 12.1% had pedal type suction machines showed that the securing of power sources
for use during a blackout was inadequate.
[7] A facility in Nagoya City supporting the lives of people with severe disabilities in thearea. It operates “Wadachi Computer House,” a place were people with severe
disabilities work, and “Samaria House,” a community residence. It has initiated a
project to provide support to people who require assistance in the event of a disaster,and engages in providing assistance to people with disabilities when a disaster occurs.

Works Cited/Further Reading

References
Oota, Jutaro, 1995, “Why are recovery/aid activities to further increase ‘independence inlocal areas’ conducted by people with disabilities so maudlin and irritating!”, Joyful
Begin No. 40 ( Urgent special edition/people with disabilities and the “Hanshin
earthquake” standing on our own and helping each other, Information Network of
Persons with Disabilities, Gendai Shokan.
Sato, Hiroko, 2009, “Concerningcomprehensive support for people with severe

disabilities - Results of a survey conducted in Kyoto City, Fukoka City, Nakano City,and Morioka City”, “2008 Ministry of Health, Labour and Welfare initiative to promote
the health and welfare of people with disabilities - people with disabilities independence
support survey research project ‘Empirical research on the sustainable ALS hometreatment model utilizing comprehensive care for people with severe disabilities’”,Designated Non-Profit Organization ALS/MND Support Center Sakura-kai.
Wheelchair flying in the sky travel salon, 2011, “Wheelchair flying in the sky travelsalon news” No. 40, early autumn 2011 issueSocial welfare corporation AJU independence house, 2008, “Report on a project toimprove the model of the system for the evacuation of people who require assistance inthe event of a disaster using GIS”.
＊First appearance: Mayumi Gondo and Nozaki Yasunobu eds., 2012, Together with37

Ars Vivendi Journal No.4 (March 2013): 18-38

Medical Devices: To live Outside of Institutions (Symposium Report; How did You
survive the Disaster and Power Outages?: Inviting People with Intractable
Diseases/People on Mechanical Ventilators Living at Home in Fukushima), ResearchCenter for Ars Vivendi at Ritsumeikan University, Kyoto, Japan, pp. 142-160.

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