Do you have a fire plan? Do you have any idea how you would deal with a fire in your home? This is not the kind of plan that you want to put together as you go along. I would call your local fire department and have then stop by and help you with your plan. They will help you to determine the best way to get out of the home and where additional ramps may be needed. They will also look around your house and let you know  which room would be best to barricade yourself into. Some rooms will be easier and therefore faster to get you out depending on windows and the construction materials of your home.

While you are thinking about fire prevention and safety, now is a good time to get carbon monoxide detectors for your home. Note that this is not something that your smoke detector looks for. If you have a fire somewhere, the carbon dioxide will set off the alarm before your smoke alarm, goes off. Don’t forget about flashlights in case the fire happens during the night you can still find your way around. All these small things can add up to a home that is safer. It also makes you better able to survive a fire instead of trying to create a plan out of your head. That is a way to get yourself in trouble with no way out. This, like many things is made more difficult because of your injury or disability. But planning could easily save your life.

It is not surprising that we are ill prepared to handle a serious attack from the Internet. In the scenario Wall Street was closed down for a week while the power was turned back on. It would be impossible to calculate the tremendous damage to our economy that would happen if no one could trade on the stock exchange for a week. There would be runs on companies, mutual funds, and probably banks. How many companies would be wiped out when things first started up again? How many workers would find themselves unemployed and their bank accounts emptied because of bank failures. People would have to figure out how to stay alive for months while the feds figured how to pay for all the accounts in banks that were insured. If you do get a check, where do you cash it? What other bank do you truest to open up a new account? Does the postal system even work? There are substantial documents that are super secret that outline COG, or continance of government. These papers outline what to do in the case of a nuclear attack where the federal government is substantially damaged. There are outlines for who is responsible for what and how to ring the economy back on line. Many aspects of that document would have to be implemented if we were to get our country back off the ground again.

How would the disabled fare in this environment? If you are in a hospital situation then you are probably the safest of anyone. Major hospitals would be the first to get power and supplies. But if you are either at home or at a shelter then things are going to get ugly quickly. Everyone saw what happened in Hurricane Katrina at the Superdome where basic supplies were gone and people were living without clean water or sanitary conditions. The government has shown that it is not prepared to deal with a large emergency and that it takes time for groups like the military to get involved and get assets to the area. During that time everyone, especially the disabled must be able to fend for themselves for the better part of a week. Hoping that someone from state or federal government is going to come knocking on your door with food, water and medical supplies is a pipe dream. Those folks that need a nurse to get going in the morning need to make arrangements to have someone stay with them during the storm so that when roads are blocked, power is out and there is no gasoline your nurse is already in the house and can help you immediately. If you require drugs that have to be refrigerated then get a small refrigerator and a few uninterruptible power supplies or a generator to keep the fridge running. Make a spot in your home that can hold food, water and other supplies for a week for each person in your household, including your helpers. That will give you enough time for emergency crews to get power back up and police and fire crews to get things back under control.

How well you fare in an emergency is directly tied to how well you prepared. Those that have generators or UPS systems will find that life without power is more of an inconvenience. Food and water are the most important things you can have and things can get ugly if you run out of either. It is easy to stock up before an emergency and to keep track of dates so things do not go bad. Make sure that you also include manual can openers to open cans of soup. Since electricity may be an issue you should also include a couple of battery powered flashlights and a radio. If you have the budget for it get a battery powered digital television so that you can pick up local stations. This is a good place to start to set up an emergency kit to help you in times of bad weather or national emergency. Either way you should be able to stay at home for 7 to 10 days without food or water to make sure you don’t run out of supplies before emergency crews get a handle on the situation.

• www.caregiver.com
• www.familycaregiver.org
• www.familycaregiving101.org
• Jewish family services (look up for your locale, there are websites for local chapters everywhere)

All of these sites are busy and have places for chatting, getting help and puboishing stories about other caregivers and what they did to survive. We have found that it is worthwhile to sign up on all of these sites because you can make friends both remotely and locally that understand what you are going through because they are in your shoes, and they may know of places to get help or money depending on your status. There is nothing worse that feeling that you are all alone, no one knows what you are going through and you are just stuck at home trying to keep your loved one alive and happy. These sites help get npast that daunting task thyat you face every day.

We will post all of this on our "useful goodies" page so that readers will still have access to it after this story is archived on the site. SCRN was created to help those that are disabled, or are taking care of someone who is. To that end we track and collect resources from across the country that makes your life easier. If you have a resource that we do not have on our site we ask that you drop a line to the webmaster and let him know about it. There are lots of local places that do awesome work but few know about it. That is sad because helpers that have people that are not utilized or money that is not distributed appears to show that need is not there. From previous experience we know that that is never the case, there is a lot more suffering than help that is avaialble. Help others that do not know where to turn, or have tried other avenues that have all turned up a failure.

The opposite applies as well. If you need help and don’t know where to turn drop us as line. We help people all the time in situations where the hospital has dumped their loved one on their doorstep and they do not know where to turn. It is a scary situation when you get home and medications from the pharmacy have needles and you have no idea how to administer the medication because the nurses at the hospital never went over the meds. We can help answer a lot of questions or point you to the right organization that can help. We have been there when I first came home and there was no one to help because we were not instructed on where to get nursing help, or that we could even get nursing care. That is also why chat rooms are so helpful because you can read what happened to others and use the resources that helped them. That is the way the disabled community survives, by helping each other to get your job done and to take care of yourself.

One would think that this was the script from a “B” movie in Hollywood, but states all over the country are debating the use of the New York protocols to determine what to do during an emergency and how to ration supplies that run low during a virus outbreak. However, public opinion has been strongly against any kind of rationing like this, and officials have worked hard to keep the public out of meetings that discuss these protocols. Our only safety net is that most states have not implemented this plan as law and most are worried what would happen to public opinion if they did put it into law. While officials are trying to state that this is for the national good and that work must be done to make sure medical care is available neglect to explain how this is going to occur. No one in any meetings to discuss the New York Protocols are willing to say that the will take ventilators and other lifesaving medical equipment from a person merely because they are disabled. We have not heard of something this sinister since the Nazi plan to rid the Reich of people that were “broken or not whole”. People that were forced to live in nursing homes because of disabilities were carted off to the same killing centers that the Jews were sent to. This law appears to allow the state to do the same type of thing under the veil of doctors and hospitals trying to give care to those that desperately need it.

People that live in states that frequently have disasters like Florida, Louisiana and California need to look carefully and see what their state officials are working on in this arena. If your state is looking to implement the New York Protocols you need to call everyone you know to put a stop to it. If this is allowed to become law then the governor of your state can decide at will that the disabled do not deserve to live and will be denied medical care that they may need to survive because others are felt to have a better chance to live. The control of life at this level is disgusting and it is sad that any doctors would be willing to put time and effort to make this a reality. No one should have the basic right to control who lives and who dies without having the family involved.

Just as we recommend that you stay in touch with your congressman and senators, we also recommend that you become part of local emergency simulations. Everyone has something to bring to the table and this lets the disabled become part of the action where they can help and community leaders learn about new people that can help during emergencies. Rather than sitting at home and staring at the television  get out of the house and help those around you. This not only lets you help others, but the community learns about you and what your needs are during an emergency. So instead of being stuck at home, the police know about you and can quickly send help to get you out of the house. Become part of something larger than yourself that changes throughout the year providing help and training to everyone. Don’t be just a victim that sits in the house waiting for something to go wrong, getting out of the house will make your life better by getting yo9u hooked up with people across all social boundaries.

It is easy to push off what we plan to do for the future as we age, but the years fly by quickly and each of us better have a plan. Now is the time to figure out how much insurance you need and how much your caregiver needs. Think about what would happen if your caregiver were to be laid  up or injured – who would take care of  you? Many insurance policies only allow nursing care for a few hours a day, anything past that is on you. So if your nurse came in the morning to get your morn king program started how do you get into bed? Who puts dinner together? Who takes care of your caregiver during this time frame? These can be scary thoughts but now is the time to get them worked out while you don’t have to deal with them now. Don’t wait until a disaster strikes and you have no way of taking care of those around you and there is no money to help you and your caregiver. The amount of money spent on a good insurance policy is nothing compared to the heartache involved when there is no one to keep the family running or to do basic functions during the day or night.

The American Red Cross is soliciting donations for help in Georgia. Feel free to help, but I have some questions I wish they would answer about their services to evacuees with disabilities:

Do evacuees in wheelchairs who seek shelter in Red Cross shelters in Georgia have accessible beds available to them, as required by the ADA?

 In Miami-Dade County, they don’t. They plan to get some, and plan to borrow some, but right now, 19 years after the passage of the ADA, they don’t have any.

Do evacuees who are deaf or hard of hearing who use sign language have access to qualified interpreters in shelters, in the event of a medical emergency, as required by the ADA?

 In Miami-Dade County, they don’t.

Miami-Dade County only offers “volunteer” interpreters, who lack knowledge of how to interpret the necessary medical terminology that would be required in such a situation. The Red Cross tells us: “We are a volunteer organization, so we use volunteers.” 19 years after the passage of the ADA, and the collection of millions of dollars in donations, they are still exploring ways to comply with the ADA.

Do evacuees who have mental illnesses, autism, or cognitive disabilities have a quiet area in the shelter, as a reasonable modification of policy?

In Miami-Dade, they don’t.

Under the ADA, the Red Cross and the County with whom they partner are both liable for the civil rights violations that occur in emergency management.

In its solicitation for donations, the Red Cross says that “Officials estimate more than 1,500 people may be seeking shelter.” Some of those evacuees are people with disabilities. What is the Red Cross doing to serve them? Where are the accessible beds? Where are the qualified sign language interpreters? How much of the money donated to the Red Cross, instead of to disability organizations serving evacuees with disabilities, actually go to serving evacuees with disabilities?

Are Counties that partner with the Red Cross aware that under the ADA they can be held liable for the failure to serve people with disabilities in general needs shelters operated by the Red Cross? Are they aware that under the Rehabilitation Act, they risk a cutoff of federal funding for violations of the ADA by the Red Cross?

Let’s never forget what happened to evacuees with disabilities in New Orleans with disabilities. As related in testimony before Congress by Marcie Roth:

On the morning of August 29th, I received a call that I will never forget and once I tell you about it, I hope you will never forget it either. My friend and colleague, former appointee to the Social Security Administration, Susan Daniels called me to enlist my help because her sister-in-law, a quadriplegic woman in New Orleans had been unsuccessfully trying to evacuate to the Superdome since Saturday. In my naiveté I thought a few phone calls to the “right” people would help, and I was sure I knew who to call. After many calls to the “right” people, it was clear that this woman, Benilda Caixetta, was NOT being evacuated. I stayed on the phone with Benilda for most of the day, assuring her that I was doing all I could to make sure help would be coming as soon as possible. She kept telling me she had been calling for a ride to the Superdome since Saturday, but, despite promises, no one came. The very same paratransit system that people with disabilities can’t rely on in good weather was what was being relied on in the evacuation. It’s no surprise that didn’t work.

I was on the phone with her that afternoon when she told me, with panic in her voice, “the water is rushing in” and then her phone went dead.

We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair. http://www.spinalcord.org/news.php?dep=1&page=0&list=643

Marcie described the Red Cross’ efforts as follows:

“As well as the disability community came together to try to take care of “our own”, we have been excluded from the larger relief community and told that we would just be “in the way” and “make things worse”. I received report after report about the Red Cross shelters turning people with disabilities away or separating them from caregivers and service animals, then sending them to nursing homes when they couldn’t maintain their independence. When I inquired about the sheltering needs of people with disabilities, one Red Cross operations official told me “we aren’t supposed to help those people, the local health departments do that. We can’t hardly deal with the “intact” people. Don’t you understand that we’re taking volunteers off the street to run these shelters?”” http://www.spinalcord.org/news.php?dep=1&page=0&list=643

When the disability community, and their allies, are asked to donate to the Red Cross, don’t donors deserve some assurances that the donations will help evacuees with disabilities? Shouldn’t some of the donations be dedicated to purchases helping evacuees with disabilities? Shouldn’t some of the money go to purchasing the services of qualified sign language interpreters, video remote interpreting (VRI), accessible beds, and other services needed by evacuees with disabilities?

Can’t the Red Cross do a better job of planning on behalf of evacuees with disabilities? Can’t the Red Cross do a better job of serving evacuees with disabilities? Shouldn’t the counties that partner with them and the donors who support them demand that the Red Cross prioritize serving people with disabilities?

As for me, I will donate to the Red Cross when the Red Cross shows its commitment to the disability community.

Marc

See http://www.spinalcord.org/news.php?dep=1&page=0&list=643 for Marcie Roth’s testimony before Congress. Also  See Transcript of Hill Briefing on Disaster Response (11.10.05) (Word Document)

See Transcript of Hill Briefing on Disaster Response (11.10.05) (PDF Document)

Marcie Roth was subsequently appointed by President Obama to serve as FEMA’s Senior Advisor on Disability Issues.

Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness

A training curriculum provided by the Community Emergency Preparedness Information Network (CEPIN) and developed by and for emergency responders and deaf and hard of hearing consumers

TOPICS COVERED:
- Understanding Hearing Loss: Communication modes and barriers
- Emergency Responder Roles: What do they do? What tools are needed?
- Emergency Preparedness: Responsibilities of consumers and responders
- Partnering for a Safer Community: How to become involved in community preparedness, response and recovery activities

The information presented in this training will benefit anyone involved with emergency planning, response and recovery efforts. The primary focus of the curriculum is direct interaction between emergency responders and people who are deaf, hard of hearing, late-deafened or deaf-blind. The Train-the-Trainer course is intended to teach participants how to provide “Emergency Responders and the Deaf and Hard of Hearing Community: Taking the First Steps to Disaster Preparedness” to citizens in their community. Check out our website at www.cepintdi.org for registration forms and more information.

TRAINING DATES & LOCATIONS:

November 6
Salt Lake City, Utah

November 16 & 17
Austin, Texas

December 5
Burlington, Vermont

TBA
Florida

NOTE: ASL interpreters, assistive listening systems and realtime captioning will be provided. All other accommodations will be provided upon request.

CEPIN would like to thank Hamilton Relay for providing lunch and refreshments at all official trainings being provided this grant period.

SCRN worked for years with disaster recovery personnel in southeastern Florida in an effort to show what was needed during a hurricane. At first city and state officials refused to help the disabled community or even allow them into shelters. After considerable work from the Centers for Independent Living of South Florida and Marc Dubin, a disability lawyer from Key West, officials slowly changed their minds. The disabled are now allowed into public shelters and there are special beds for para and quadriplegic people that cannot sleep in a regular bed. However, even with documents from the Department of Justice showing how to transfer the disabled and communicate with them, some officials are refusing training. Broward county has a new emergency manager that has been in the job about a year and wants to fix the problems the disabled are running into with sheltering and after emergency help. The officers of SCRN moved from south Florida to Atlanta partially because it was not safe for wheelchair bound people in shelters.

Many governmental groups believe that the ADA does not apply to them or that some other local law “grandfathers” them into ignoring basic rights. That is not the case and we are working with Atlanta officials so they understand what is required of them and what they must do doing an emergency to help the disabled. This is not a matter of convenience, if police and fire officials do not help the disabled then people are going to die. We have stories from Hurricane Katrina of quadriplegics drowning in their wheelchairs because no one in emergency services could be bothered to go get them. In Florida most police and fire personnel will not help a disabled person get out of their home. Once the disabled person is outside the front door they will get help but not before. So if they cannot get into their wheelchair they may indeed be sentenced to death because emergency personnel just won’t help. We need enforcement of existing laws along with substantial penalties if local and state governments cannot get their act together. It is great that the Department of Justice has documents showing emergency personnel what their job is when dealing with the disabled, but they are not following that law. The Bush administration did nothing about this problem. Now that we are heading into the most dangerous part of hurricane season, what will the Obama administration do?

Things are just as screwed up during the emergency. The Red Cross all out REFUSES to help the disabled transfer from wheelchairs to beds. Good luck of you need help getting into the bathroom. There are many documented cases of people in wheelchairs defecating on themselves because no one will help them into the bathroom. Even though it is the law of the land to help the disabled through the ADA, and there is even documentation from the federal government on how to work with the disabled, the Red Cross says the law does not apply to them. This could be fixed by the states and counties that pay the Red Cross to help those after an emergency by forcing them to follow the law or stop using them. But that never happens. The counties and states do not want to police the groups that supposedly help the public after a hurricane so groups like the Red Cross get paid to do little more than hand out cold coffee and bags of ice.

Many people don’t hear about this because it is impossible to force groups like the Red Cross to do their jobs during the emergency. A hurricane is on it’s way and they refuse to let you on the bus. So you have to make a decision – scream at them to follow the ADA and be left behind, or let them get you out of there. But the transportation means your service dog is left behind along with your wheelchair. SInce the Red Cross doesn’t have the facilities to take care of the disabled, they send you off to a nursing home that does not have the staff to keep you safe. The disabled end up with bed sores which sends them off to hospitals for weeks on end to fix these problems. After getting out of the hospital you now have to fight with your insurance company to get a new wheelchair because your old one was left at the bus stop and was washed away during the storm. Then you get to take weeks searching for your service dog which hopefully was picked up by one of the animal control groups that hopefully has a no-kill policy. It is not unusual to spend two to three months searching animal shelters before you find your dog again.

For those that end up in a shelter, the deaf find it impossible to find out what is going on or what facilities are available to them. There are documented cases of the deaf starving in shelters because no one let them know that food was available and where to get it. They are not told up to the minute new stories so they don’t know the severity of a storm or when they can go home. There are no facilities for the deaf to make phone calls to their families to let them know they are safe. But the able bodied are allowed to make those same phone calls. Note that there are counties that have agreed to hire sign language translators so that the deaf have someone to converse with and tell them what is going on. But it isn’t everyone and money is not a reason to leave the deaf to starve in the dark. The ADA has guidelines that are republished by the federal government on what to do for the deaf community, but those documents are typically tossed aside and ignored.

As long as no one sues there is little reason to change how things are done. The newly disabled think that they can just go to a shelter and be handled as anyone else and get the help they need. It is giant surprise when they call and find out they are not welcome in the shelter and will be sent either home or to the hospital. Upon getting to the hospital, they find that most hospitals will not take the disabled because they cost too much. Nurses and doctors need to be present to help with bowel programs and to dispense medication like blood pressure and insulin to the disabled. That all costs money that the hospital doesn’t want to pay – even if the ADA says they must do this because even accessibility is guaranteed. So the disabled are then sent to special needs which typically won;t take anyone that is quadriplegic or has chronic pain because they don’t have medics, nurses, or doctors willing to transfer or give medication to those individuals. So  you get to go  home. the most dangerous place with no help because the nursing staff is home with their families. One hopes their houses don’t collapse during storms or tornadoes. Bottom line is the disabled are left to their own devices to stay alive while the able bodied are well taken care of by the governmental infrastructure. Our tax dollars hard at work.